Topic: FDA/NIH confirms retrovirus findings in CFS patients
timaca
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m0joey~ In my opinion, it's not going to be the same virus. In my case, we caught by labs, a low platelet and a low WBC during a time when I was quite sick neurologically...followed by antibody titers to Coxsackie B3 and B4 going through the roof. Both ID doctors I saw said that this was an issue with Coxsackie...which I had been battling, and which had gotten more or less under control, until it reactivated.
I've not been tested for XMRV...but based on what I have been tested for, there is more than one pathogen causing a problem in me. And it really does seem to me that my problems started with the reactivation of a bacterial pathogen first, followed by various viruses.
This is a complex problem, and I'm grateful that there are some good doctors working on it. And in my case, I'm very grateful to have two good ID doctors helping me.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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when I saw same virus, I mean the same retrovirus. I think there are going to be CFS patients that don't test for retroviruses at all. Dr Chia's son was cured by taking antivirals for his enteroviruses, so do I think he had a retroviral syndrome? No. It's just too bad he's had so much trouble getting pharmaceutical interest and grants for anti-enteroviral studies.
I'm really interested in seeing if the retroviral subset of CFS is caused by one partiular type of retrovirus as is seen in AIDS.
Posts: 713 | From Los Angeles | Registered: Oct 2007
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I'm curious what your rationale is for that statement: bacterial reactivations followed by viral. Doesn't the phrase "bacterial reactivation" imply that bacteria are secondary? What are they being reactivated by?
If you saw my titers when I was at my sickest you'd have no question I had chronic EBV. I even had high early-antigen EBV markers 2 years into my illness. So I've treated the EBV and I'm still sick as a dog, so those titers don't mean a thing. What means something is treating something and functionally improving, not just clinically. How did you feel after you treated these bacterial infections? Have you targeted the coxsackie with antivirals or frequency treatments and how did you feel after that?
Posts: 713 | From Los Angeles | Registered: Oct 2007
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posted
It really doesn't matter to me whether it is the same virus. The sad part,as Joey pointed out, is that they had a chance to start studying a retrovirus in 91 that the majority of cfs patients had that was found inside the mitochondria which was the hallmark problem of the disease. Who knows where that could have led them if they had spent money on researching instead of trying to discredit her. More money could have led to the discovery of other viruses or more knowledge of that virus.
Posts: 805 | From Utopia | Registered: Feb 2006
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Well, I hope this Wittmore Petterson Institute has a lot of money. Enough to do all of the research needed. Because it sure seems like the CDC doesn't want to investigate a lot of things lately, not lyme disease or co-infections, not the retrovirus found in 1991, and they are already saying they can't reproduce the findings the Whitmore Petterson Institute found. Sad.
It seems as if they rather us be sick. And who does that help??
Posts: 893 | From Florida | Registered: Dec 2008
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posted
The hardest part is certainly over. WPI's sina qua non was getting the attention of researchers, the govt, phamaceitical companies, and the public about a possible retrovirus being undetected in the blood supply and being associated with CFS. Create a panic that the public knows about (ie the 300+ articles about the FDA/NIH findings and even the CDC needs go do something for the sake of its PR.
Pharmaceutical companies will pour R&D into clinical trials because if ARV treatment indeed helps a sizeable subset of patients, the investment will pay off big time.
It all depends on treatment, and that first successful clinical trial will probably be the tipping point for WPI's continued success.
Posts: 713 | From Los Angeles | Registered: Oct 2007
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m0joey, I'm not sure Dr Chia cured his son. From what I read, his son is in "remission," that is, they are keeping it at bay with treatment. Perhaps his true problem is an MLV, and the enterovirus is secondary. Also, I don't know if everyone is aware, but EBV has been implicated in a whole host of diseases from MS to Hodgkin's Lymphoma to RA to cancers, etc. because titers of EBV are through the roof in so many people who become diseased. That's why they thought EBV WAS the culprit. I think it makes more sense that something bigger is driving the other viruses to reactivate. I intend to be tested for XMRV through VIP, and I would be interested in my sister's results if she is tested, too, as she had Hodgkin's in her early 20's. And my mother had stomach lymphoma (cancer) in her early 60's. REALLY WONDER if this thing is passed down through mother to child. And now my son is showing symptoms.
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posted
p.s. If my XMRV test is negative, then I'll aggressively go after the Lyme and test for every co-infection known to man!!
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sparkle7
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This is an interesting article...
H-E-R-V not H-I-V An On/Off Switch for Retroviruses - Can it be that Simple? by Liam Scheff
I'm not sure how it relates to everyone's studies but I found it interesting. Seems to point to methylation as a potential "cure".
I have to do more studying about all of this - jeez - one has to have a PhD to understand all of this...
I can't help but being a bit suspect of some of the "new advances" & pushing the drug angle... Don't get me wrong - I'm glad it's coming out of the closet (so to speak) but I can't help to think about the huge profits to be made. Especially, if people have to take these, probably, expensive drugs for the rest of their lives...
There's some scary implications in all of this if one follows "conspiracy" theories.
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sparkle7
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PS - my mother had non-Hodgkins lymphoma... if that means anything.
How do you spell - epigenetics...?
PPS- Isn't it a bit "funny" how all of these things are getting closer & closer - like Lyme, opportunistic infections, "co-infections" parasites, HIV, AIDS, cancer, autism, herpes, CFS, fibromyalgia, Morgellons, vaccines...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
Just thought I'd mention that many in the CFS community have done exhaustive work on methylation with Rich Van K and Amy Yasko. This has definitely not been the answer for the vast majority of patients. If this were purely an endogenous issue, it seems methylation would be effective enough at silencing these viruses. There seems to be something more at play here. Endogenous viruses have evolved over time to comprise around 8% of our own DNA so whether any of them are actually pathogenic or not is very suspect.
"However, (endogenous retroviruses) are generally only infectious for a short time after integration as they acquire 'knockout' mutations during host DNA replication."-http://en.wikipedia.org/wiki/Endogenous_retrovirus The border between exogenous and endogenous isn't clear cut. There is a transition period, and a MLV which is infectious to humans now may not be in a thousand years. In any case, it is much more statistically likely that a single exogenous retrovirus is infectious than any endogenous retrovirus, because we've been dealing with endogenous retroviruses for millions of years and the fact that they're endogenous implies that our immune systems already mounted a fitting response for that much longer.
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sixgoofykids
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quote:Originally posted by sparkle7: PPS- Isn't it a bit "funny" how all of these things are getting closer & closer - like Lyme, opportunistic infections, "co-infections" parasites, HIV, AIDS, cancer, autism, herpes, CFS, fibromyalgia, Morgellons, vaccines...
I think it's because at the bottom of all the issues you find a dysfunction of the body. Our bodies were designed to fight off intruders. When it gets weakened over time by our toxic environment and constant exposure to more and more bugs, it finally gives in.
My infections were primarily from ticks (for mOjoey there are retroviruses), but there were a lot of other things to address - KPU, toxins, hormones (thyroid, progesterone, adrenals), parasites, etc. My body didn't work right. When given the proper tools, my body became healthy again. It needed help, it wasn't strong enough to do it on its own.
Killing bugs is part of the equation. But only part. This is why the Bionic 880 is not a stand alone treatment. It works on Lyme, yes, but not all this other stuff. I think abx are the same. For people who don't see improvement, there might be more to look at.
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Hoosiers51
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m0joey,
I agree with what you said, that if 300 articles come out, like what has happened, the CDC can't ignore it. My hope with this CFS thing has always been, that if enough people are suffering from chronic fatigue, it will create a demand that the pharmaceutical companies won't be able to resist ignoring, from a financial standpoint ($$$). Once the cause has been found (like 20 times over, meaning, studies replicated) research on drugs and treatments will come (as I'm sure it's already happening), and that research will not only benefit those that want to treat with drugs, but those who will want to find natural solutions (if any are out there).
Even if some of the CFS population has Lyme, then some have this or that, I truly hope they are able to solve the problem for the section of those that might be suffering from chronic infection of some other kind.
CFS didn't just go away like a trend, so I hope that now more and more in pharma and academia will see it as a problem that needs a solution.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Thanks six. I agree with just about everything you just said, most of the time.
I just don't know how infectious retroviruses fit into the terrain theory. Perhaps HIV-positive people with low-toxin, low-stress, high-immune bodies have had a lower incidence of AIDS, but it certainly has seemed to be indiscriminating in its path to destruction.
You and I both done as much terrain-building work as anyone, but obviously the results have been different. Of course, the safest way is to do both; maybe that's why Dr. Peterson says XMRV+ pos patients may end up needing to take both HIV drugs and immune modulators.
Even while killing retroviruses, I'll still be doing weekly chelation, mineral replenishment, making sure all my organs are minimally stressed and properly supported (particularly HPA axis), balancing energy flow, and managing secondary infections. The two-step approach obviously increases our chances of success, regardless of what primary infection we have.
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timaca
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m0joey~ In my case I was perfectly healthy until I got a steroid shot to my knee. 3 weeks later I became very ill with bizarre symptoms. Shortly thereafter I had knee surgery and was given IV vancomycin. 12 days later I was in the worst pain in my life and if I had died it would have been OK with me. I continued to fall apart, with 2 bouts of the "flu" occurring a month apart from each other. I struggled to get a diagnosis.
Looking back, and knowing what I now know, I believe a steroid shot to my knee reactivated a bacterial pathogen that was sitting latent in my knee joint. That was either lyme or Cpn. My reaction to the IV vancomycin was a huge herx. My two flu like episodes, were likely 2 different viruses reactivating.
You will need to sign in to read the posts. I am Timaca there too.
Antibiotics, and antivirals have helped me. I am much better than I used to be. I am not well, but at least we have some idea what we are fighting.
Best, Timaca
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sparkle7
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Thanks everyone... re: Just thought I'd mention that many in the CFS community have done exhaustive work on methylation with Rich Van K and Amy Yasko. This has definitely not been the answer for the vast majority of patients.
Yes, I tried taking NAC, glutathione, selenium, etc. for a bit (like a month or 2) & I didn't feel much different. I did it as a sort of trial to see if further experimenting with methylation would be of any use to me.
It's a shame it can't be something easy like that. We all just have to keep searching. The majority of tests being inaccurate is very difficult for all of us. It really does help to know what we are fighting.
For me - I think I'm going to focus more on parasites. I feel better when I address that aspect. After - maybe the XMRV issue...?
It's alot to comprehend about retroviruses, though. It's not something you want to just run off & take the first drug that comes out for it.
It's just a shame that so many people have suffered with this for so long with no recognition & ridicule, besides... Yuppie Flu is fairly derogatory - for those who remember back then.
When will it end that people with unusual illnesses will stop being ridiculed for being ill? We could use a bit more compassion with all of this...
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sixgoofykids
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Yes, it's not 100% terrain. The terrain theory often leaves out that you have to fight the bugs as well as make the body healthy. But still the question remains, why you? Why do you have the retroviruses and others who were exposed do not? Why didn't I? I was certainly sick enough to have them and CFS was a problem for me, a primary problem dating back to the early 80's.
DNA? Is there something missing like KPU was for me? KPU seems to be the biggie for me, the bionic *just* killed the Lyme, but KPU balanced the mineral deficiency due to a genetic malfunction of my body.
Babesia is gone with me but I still need iron. Why?
I'm better but I still need thyroid, why?
We've done all the terrain work, but something is missing .... part is getting rid of the retrovirus and part is figuring out why it is living there to begin with. If you can figure that out (you'd make millions, but that's beside the point ), then you can not only beat it down, but also make it so it doesn't cause a problem in the future.
All theory ... Obviously I don't know anything about retroviruses.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Since we've both done photon therapy, a few of us were discussing photons vs rifing and I thought:
Technically treating infections with photons is reflecting back the emission of that pathogen through the homeopathic vial to restore harmony. In the process you do kill pathogens because they're causing an imbalance in your body but only to the extent that they're no longer imbalanced, whereas rifing is killing everything that is vulnerable to the rife frequency. In my mind, it is still homeopathic in nature and much more precise than rifing when you can find the appropriate vial.
So treating retroviruses with photon therapy may very well fit into a modified terrain theory, just like you didn't really start to watch the layers pull back until you treated the lyme.
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Leelee
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quote:Originally posted by sparkle7: When will it end that people with unusual illnesses will stop being ridiculed for being ill? We could use a bit more compassion with all of this...
You said it so eloquently.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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sparkle7
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Gee, thanks..
Has anyone been been able to get homeopathic XMRV? Have people been working with it?
I'm not sure if photons+homeopathy is better than rife... They are just different. It probably depends on the person. It may help to use some dowsing to see which it best for the individual.
I usually get NO for rife or zappers... Herbs seem to work best for me for some reason. The LightWorks was too unpredictable for me in combination with the parasites I may have. I still need to work on that first - I believe.
I bet genetics & toxins have something to do with XMRV. Could also be emotional issues, stress, getting a cold or the flu, EMFs or the straw that breaks the camel's back (so to speak)...? Might be getting bitten by a tick, flea, mosquito, spider, bed bug...?
People are under so much stress these days. I'm sure getting some deep relaxation doesn't hurt.
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Hoosiers51
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I don't mean to be a thread hijacker...just thought this was the best place to say it, since everyone here is interested in CFS and healing the body.
The more I think about it, I am starting to think that sleep disorders play a bigger role in CFS (though I realize having a sleep disorder excludes you from the CFS criteria) than most people realize or want to admit.
Just from using CPAP a couple weeks, I have gotten up before my alarm goes off once, after only 7 hours of sleep, which NEVER happens, and also, my dark eye rings are 50% better (and they were severe).
I hope everyone here has had a sleep study? And regardless of things like apnea, I think that there is more about "not getting deep sleep" that is still not understood, that might play a role in CFS. Like why do some people do so much better after being "knocked out" (getting into deeper stages of sleep) with Xyrem?
Sleep disorders explain immune issues. I don't even think I need to go into detail on that. If you aren't getting good sleep, your body is not healing, your immunity weakens, and opportunistic pathogens can then take over. People who aren't getting good sleep have lowered human growth hormone.
Untreated apnea can lead to hypertension, can worsen diabetes, can cause psych issues, etc etc. And that's just one sleep disorder.
I think this is just one of the many issues in the spectrum of CFS patients, but I hope everyone here has thoroughly investigated this road, because the technology to diagnose at least some of the disorders has been developed, and there is a known cure (positive airway pressure therapy), so you might as well rule out the things that are easy to cure first.
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The vast majority of patients I know with CFS have severe sleep impairment, but make no bones about it: this is a symptom and not the cause of any case of true CFS. Many have done sleep studies and been found to have no stage 3 or 4 sleep, myself included. I saw a physician at UCLA who is one of the top sleep disorder specialists in the world, and she prescribed me trazodone which is supposed to increase stage 3 and 4 sleep, and said that would cure my "idiopathic fatigue" disorder. I don't have sleep apnea.
Granted trazodone doesn't work as well as xyrem because it doesn't stop alpha wave intrusions, but it helped my sleep impairment and nothing else. Even CFS patients I know of on xyrem either can't tolerate the drug or feel better but are far from cured.
I'm sure there are patients that have true sleep disorder that are chronically-fatigued, but they do not have CFS. I spoke with Dr. Benjamin Natelson who is the principal investigator of the Xyrem study for CFS patients, and he is one of the top CFS specialists in the country so you know he's not gonna be studying "chronically-fatigued" patients. Like the other published reports, some improvement but far from a cure.
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sixgoofykids
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mOjoey, yes, I think you're correct. I saw the photons as strengthening the body to fight the bugs while the vials were the roadmap pointing out what the problem was. I think that was why you had to treat with photons if you taped the vials to yourself. Taping the vials without the support could be a bad idea just as treating with photons without the vials might give the energy with no direction.
I was wondering. I used saliva/phlegm for viruses like common colds and flu. Would homeopathic dilutions of saliva work better than blood for retroviruses? Obviously working SLOWLY for you.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Hoosiers51, I have CFS symptoms, predominantly recurring flu-like symptoms and severe post-exercise crash. I think I might have a sleep disorder, possibly central sleep apnea, but I don't have insurance and can't afford the sleep study. I slept like a rock all my life until my immune system crashed 14 years ago. After I got sick, I went through years of total insomnia and now can sleep some but with frequent awakenings. I don't snore, but I wake often either with a gasp or sharp intake of breath -- or simply heart pounding wildly. It takes awhile to get calm again, and then back to sleep only to reoccur later ... and I've had the dark undereye circles for many years, but I only developed the breathing cessation issue within the past 6 years (that I'm aware of).
Posts: 277 | From Pennsylvania | Registered: Apr 2010
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Sorry, perhaps I should start a new thread since this is off topic?
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sparkle7
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Sleep is a big issue with fibromylagia, too. Like m0joey says... it's a symptom of the illness not an end point. With CFS you sleep & sleep but the fatigue is constant... With fibro - in my experience - it's more about pain & less about fatigue. Although, fatigue is still an issue. You still get the alpha intrusions & low growth hormone levels with fibro.
Alot of people use infrared gadgets to treat muscle pain... They use it on animals, too. So, people do use the photons without the homeopathic nosodes quite alot. People also use infrared saunas...
I have tried using homeopathic remedies with the LightWorks. I haven't done it alot, though. Brussels said she would not use the photons with babesia. I had a bad reaction with my situation. I think it's comes down to the parasites being an issue at some level. I don't know why...
If the parasites are a problem, you have to be a bit cautious with the photons. Just my 2 cents... I thought I was done with the parasites last year but it turns out that I wasn't.
If you have them, it's kind of a big issue that may be somewhat invisible. I'm still working on them... I believe. The toxins they excrete can mimic fibro & other things. Eventually, they can lead towards cancer in some cases.
I would think that any genetic material would work in regards to a retrovirus... it's in the DNA... (?)
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Tincup
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Things to consider-
Ampligen is only available as an intravenous drug. (Will the IDSA simply allow Lyme patients who they claim are not sick .... because there is no such thing as "chronic Lyme".... have a pic line for a year to 18 months to cure what they say doesn't exist?)
Typically 400mg is administered twice weekly over the course of about one hour (in office only- experimental drug). Most subjects experience mild flu-like feelings for several hours after the infusion.
While research demonstrates that 6 months of therapy can produce a significant response, we generally recommend at least 12 months of therapy.
Persons who have been ill for a long time are well advised to consider 18 months of therapy.
The cost of Ampligen is about $150 per dose, or $1200 per month. Infusion costs, medical visits, and laboratory add approximately $1000 monthly, thus the total cost may exceed two thousand dollars per month.
Cost for the Ampligen therapy- $24,000 - $36,000.
There are several restrictions that apply to subjects receiving Ampligen treatment, aside from the fact they must meet the CDC criteria (definition) of CFS and no where does this mention Lyme disease or coinfections.
The subject must be 18 to 60 years old and very ill. Female subjects with child-bearing potential are required to use regular birth control.
While most medications may be continued, subjects may not use immune modulating drugs (such as gamma globulin, steroids, interferon, etc.), anti-viral drugs (like Zovirax, Famvir or Valtrex), non-steroidal anti-inflammatory drugs (such as aspirin, Advil, Naprosyn, etc.), or any other experimental medication.
Other restrictions may apply, and each subject is considered individually.
More than an hour of traveling to and from a medical office is difficult for most subjects, and can ``undo'' the benefit of Ampligen.
William A. Carter, M.D., the co-inventor of Ampligen, was a pioneer in the clinical development of interferon, a protein therapy now approved for more than a dozen viral diseases and commanding a market in excess of $2 billion.
To date, HEMISPHERx and its subsidiaries have received over 200 patents internationally to protect its proprietary position in NA and related drug technologies.
the costs you described are for the open-label, cost-recovery trial. They will be re-starting phase III clinical trials soon (free drug but might get placebo) for FDA approval. At the moment, this drug has no indications whatsoever for borrelia or any bacterial infections. Hemispherx is however doing a retrospective analysis of their previous patient samples to see if xmrv+ patients responded better on the drug. These results will be announced at the NIH conference on sept 7-8.
If you think chronic Lyme patients have been screwed over by the IDSA please understand that there at least exist a multtude of LLMDs who administer IV antibiotics and multiples more who prescribe oral antibiotics.
Compare this to the CFS community where ampligen has been used by a total of 3 doctors in the last 20 years, and as you mentioned, patients have to move to either Reno or Charlotte to get administered since commuting is not recommended. Salt lake city is no longer an option for the open-label trial, so it's down to 2 doctors if you want to ensure getting the drug.
To put this in perspective, CFS patients haven't even gained the equivalent of consideration of a 30-day course of doxycycline in the minds of physicians.
With regards to chronic Lyme patients getting coverage for something like ampligen: if HGRV is found to be the cause of CFS and some Lyme patients test positive will they still be called Lyme patients or CFS patients? We would get insurance coverage for FDA-approved treatment for HGRV-associated syndrome or whatever name they come up with for it.
[ 08-29-2010, 03:39 PM: Message edited by: m0joey ]
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sparkle7
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Comparisons of illnesses & which is worse is pretty pointless... I had a CFS diagnosis & fibro & Lyme... I had CFS back in the 80's & I was able to get well for about 8 years. I also got the fibro - then, Lyme diagnosis. So, I've experienced a bunch of this stuff over a long period of time.
They are all bad & under-treated. There isn't enough money going into any of these illnesses. It's been like this for probably 40 years. Many people are suffering & have no idea what to treat or if the treatments are effective. The tests are not accurate.
I don't know how accurate the XMRV or HGRV test is. We all just have to try to make the best of things until there is more information. The bottom line is that we just don't know right now which pathogen is causing what.
Everything about this is a guessing game - it's just one educated guess after another. It's important to know that not all Lyme symptoms may be Lyme or a co-infection. There are many causes for the symptoms we may be having & there is a big overlap. So, we have to be cautious with what we use to treat ourselves.
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I wasn't trying to make a point that one is worse for the sake of sympathy or woe-is-us. Tincup made a point bemoaning the potential lack of availability of ampligen vis-a-vis lyme patients, and I just wanted to put that in perspective of what CFS patients have had to deal with for the last 20 years, being denied the one drug that seems to have the most benefit for patients.
If the analysis shows that xmrv+ or hgrv+ patients responded well to ampligen, hopefully that will lend more support to phase III in what has been a terrible go at FDA approval for hemispherx.
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sparkle7
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I'm not trying to be argumentative or ruffle anyones feathers... I understand. I just want it to be clear that we can all be on the same side here.
It's not about mine is worse, etc. In the end... it's really tricky to know what we are all dealing with. It's very complicated. We have not gotten enough support over the years for how much we have all suffered.
In comparison - AIDS research got huge funding... Why were the rest of us ridiculed & left behind? It's hard to comprehend without coming to some strange conclusions.
It seems that if we are all united is some manner - it would be better. When everyone is separated in their own tangent, it makes it easier to divide us from getting the support we should be getting.
Support being disability money, insurance, research into better treatments & testing, media awareness, compassion...
I was reading about how these people were protesting at military funerals, saying that AIDS was God's way of punishing gay people (& somehow that has to do with people dying in the war in Afghanistan) & I realized that we still have a long way to go.
I know it's a bit off topic but it is important for people to consider XMRV or whatever they are calling it in regards to "clinical" Lyme diagnosis's. The symptoms of these illnesses do overlap.
The concerns of people with HIV may turn out to be similar to the concerns of people with Lyme, CFS, Fibro, cancer, autism, etc.
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Tincup
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"Tincup made a point bemoaning the potential lack of availability of ampligen vis-a-vis lyme patients..."
Actually, Tincup is trying to point out ALL the facts (with a little dose of reality) so people can make an informed decision.
I think that is fair and reasonable to do on a post pushing a treatment that is risky and can be very expensive.. and that isn't designed to address Lyme and coinfected patients.
Plus I am getting questioned about it, people are sending me lots of links and information about it to read.... so I needed to do the research anyhow.
And I am sure we can all agree we certainly don't want to see Lyme patients (any patients) devastated if they jump on the XMRV wagon to take a ride, especially if it goes nowhere... so they need to have available as many perspectives on the situation and as many facts as possible.
Especially if Lyme patients are considering forking out $36,000.00 for an unapproved treatment for CFS because they aren't getting well enough fast enough to suit them.
I don't believe I've ever communicated with anyone with Lyme and coinfections that didn't want to take the quickest route possible to get cured and get back to their life... so the potential to have some patients abandon their Lyme treatment too soon is very possible.
Thanks for explaining. I think you have the right intentions and I think we agree on the need to voice concerns about jumping onto any expensive and/or risky treatment bandwagons. However, I think right now a far more valid worry you should have for lyme patients is jumping into HIV drugs. Lyme patients can't get ampligen right now even if they wanted to because of the barriers to access I listed above.
OTOH they can get AZT, Tenofovir, and Raltegravir from most open-minded infectious disease doctors if they bring in the positive studies from WPI, FDA/NIH and a study showing in vitro effectiveness of those three drugs on XMRV by Dr. Ila Singh.
I'm glad some including Dr. Jamie Deckoff-Jones www.treatingxmrv.blogspot.com are taking the plunge so that the rest of us whom are anxious to see whether the rationale is there have something to chew on, but I don't envy them and would advise anyone wanting to follow in their footsteps to wait for clinical trials and if you insist on not waiting, to do your homework and work with a doctor who has knowledge of both AIDS and CFS.
Posts: 713 | From Los Angeles | Registered: Oct 2007
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I'm not jumping on any bandwagon... The XMRV & CFS connection has been in the mainstream media in the past week or so. Even Fox News & NPR... It was a major headline.
I don't think it's a fad thing at this point. It's been a long time coming. I do think there are many people who are ill with Lyme who might either or also have this retrovirus.
I didn't feel that anyone's posts were pushing ampligen... It's just one potential drug to look into. It's still all uncertain at this point. No one knows how all of this will pan out.
If a person has been ill for a long time & the abx didn't help - it may be worthwhile to consider XMRV. Especially, if they got non-conclusive tests &/or a clinical diagnosis.
It's just one more piece to add to the puzzle. It's all pretty new - so, we don't know where the solutions or cures will be, yet.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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quote:Originally posted by m0joey: I'm glad some including Dr. Jamie Deckoff-Jones www.treatingxmrv.blogspot.com are taking the plunge so that the rest of us whom are anxious to see whether the rationale is there have something to chew on, but I don't envy them and would advise anyone wanting to follow in their footsteps to wait for clinical trials and if you insist on not waiting, to do your homework and work with a doctor who has knowledge of both AIDS and CFS.
I got a bad vibe from reading that blog. Definitely not a Dr. I would see.
Well, I am glad they are doing better, but the arrogant attitude on that blog just bugs me. I'm not sure if others see it that way.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I didn't really see it that way (re: arrogant attitude in blog). I'm not about to rush off & take any anti-retrovirals, though. This is just one retrovirus... Who knows? There could be 100s of them that haven't been discovered yet.
I'll keep watching & waiting. Doesn't even make sense to get tested. There's no real treatments... I can't help but feel that we are so screwed. Life goes on...
Good luck to the brave souls who want to experiment with this.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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quote:Originally posted by sparkle7: I'll keep watching & waiting. Doesn't even make sense to get tested. There's no real treatments... I can't help but feel that we are so screwed. Life goes on...
I strongly disagree with this. Even if you do not want to use antiretroviral drugs yet, there is still great value in knowing whether you are positive. There are many psychiatric drugs and dietary supplements that have been shown to improve outcomes in HIV infection that could potentially be used to improve your health.
In another scenario, someone with chronic Lyme who has reached a plateau with antibiotic treatment might be relieved to understand that there is a good reason for this -- an immunosuppressive virus that they haven't addressed yet. This knowledge could save someone years of plugging away hopelessly with antibiotics, subjecting themselves to needless costs and side effects and risks while making no further progress due to the XMRV infection.
Posts: 195 | From Manchester, CT | Registered: Jun 2008
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I can understand your point, Funk. I've been dealing with some form of this since the 1980's - if the XMRV theory is correct. I've been self treating for a majority of that time.
For me, it's not really going to make a big difference in calling it by another name. The discovery does really help! I just don't feel it's necessary to shell out big bucks to get the test right now.
I can take supplements on my own without a diagnosis. Not all that into drugs so I'll probably avoid them as much as I can...
I am a little concerned with some potential repercussions of having a fixed diagnosis - like denial of insurance or benefits, etc. You never know where this will lead in the future. I'm sure there is discrimination towards people with HIV to some extent. Maybe I'm just a bit paranoid..?
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Also- I got this in my e-mail today about MMS.
2. Chlorine dioxide does no damage to the human body: The next argument was that chlorine dioxide goes forth and kills everything in its path including good and bad bacteria, parasites, viruses, fungus and also damages human body parts. But that is not so.
There are thousands of industrial corporations listed on the Internet that use chlorine dioxide for the very reason, because it can be very selective in what it destroys (oxidizes). When properly used at low levels of concentration it can select pathogens and not affect body parts.
4.1 Chlorine Dioxide Chemistry: Chlorine dioxide functions as a highly selective oxidant due to its unique, one-electron transfer mechanism where it is reduced to chlorite (ClO2-) (Hoehn et al., 1996).
4.4 - Chlorine dioxide is a strong oxidant and disinfectant. Its disinfecting mechanisms are not well understood, but appear to vary by the type of microorganism.
4.4.1 - In the first disinfection mechanism, chlorine dioxide reacts readily with amino acids cysteine, tryptophan, and tyrosine, but not with viral ribonucleic acid (RNA) (Noss etal., 1983; Olivier et al., 1985) It was concluded that chlorine dioxide inactivated viruses by altering the viral capsid proteins.
-----
It's not for everyone but I thought I'd post this. Any thoughts?
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Glad you are understanding the need to point out all things involved.
MoJoey said... "I'm glad some including Dr. Jamie Deckoff-Jones www.treatingxmrv.blogspot.com are taking the plunge so that the rest of us whom are anxious to see whether the rationale is there have something to chew on,.."
I suppose you know, maybe not, (?) that this person did not test positive for the virus (nor did the other patient she is treating) ... so any improvement, if there is any, can not be attributed to the meds, the protocol or to its action or non-action on the virus in question.
In the name of science- even weak science- it is a futile experiment, in my opinion, for the goal of measuring results of a treatment that would be linked to the virus if you don't have the virus.
For example, if I ate ice cream and felt better, we couldn't say it helped fix a specific disease if I don't have that disease.
In my heart I do hope they get better... my wishes are for that... but the results of their efforts are not a reliable measure of the outcome of treating that virus with their made-up protocol.
Oh.. and I had to laugh at your unintentional oxy moron... it made my day actually, so thanks for that.
"open-minded infectious disease doctors"
kday.. I don't believe that doc is treating patients- other than self and family... but not 100% on that.
Dr. Deckoff-Jones and her daughter did test positive for the virus. It's laid out very clearly in the "about me" section of the blog: "My daughter and I are XMRV positive by culture."
Also, she is not treating herself or her daughter. This is, once again, laid out in her "about me" section:
"Please note: I am not prescribing for myself or my daughter. My daughter is 20 years old and makes her own medical decisions."
If we are going to have any further discussion about retroviruses, can you please do some research about them first? Do you understand how antiretroviral drugs work? They inhibit retroviral replication. This isn't vitamin C or even an antiobitic such as minocycline that has been shown to have anti-inflammatory effects. That's their only mechanism of action, so if a person is feeling better, it's down to two reasons: placebo effect and inhibition of retroviral replication.
Posts: 713 | From Los Angeles | Registered: Oct 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
When I saw this earlier comment in some of the writings to the blog writer from those performing the tests ... it led me to believe they were not positive for the virus at that time.
"...Even if you and your family do test negative, the serology will find evidence of infection (even if we cannot find the virus in your culture)...."
I also saw a statement a while back to the effect they were self-treating.
Please note- the blog doesn't contain all the items on it that I've read to and from the author since back in January on this topic. (Blog starts in April, several months later)
And since those two items I mentioned are now specifically pointed out in the blog (as you stated "laid out very clearly"), maybe they have since been tested and/or are now clarifying the self-treating comments?
You said.. "If we are going to have any further discussion about retroviruses, can you please do some research about them first?"
I've done it or I wouldn't be in here adding in the "reality comments".
Just because you don't agree with me on some topics doesn't mean I should think you haven't done your research and you don't know what you are talking about...
And vise versa.
We just have different motives and opinions. I am pleased you are sharing the information for folks. And I am sure you are just as pleased that I am filling in some of the blanks.
Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Psycho issues: 'do I want to get better?', 'does everyone I love want me to get better?', 'Am I sick because of something that happened to my paretns or grandparents?' 'What does fatigue mean?, that I cannot do things on my own. Am I showing that for myself or for other people around me?'
Psyhco issues could not be the single cause but it could be one of the causes for illness. If the person tests for 'I don't want to get better', no matter what treatment you do, you won't get better in the end.
Terrain, bugs, psycho issues. Besides that, there's HIV question of infections getting there and killing almost everyone, of course.... No answer for that...
Posts: 6200 | From Brussels | Registered: Oct 2007
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posted
One question ?....how many of you have had your immune system checked by your treating physician ? "T" Cell count? Before and after treatment? Dutch
Posts: 6 | From Moved to Florida | Registered: Apr 2010
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posted
Before and after what type of treatment? None of us on this thread have done antiretroviral therapy yet
Posts: 713 | From Los Angeles | Registered: Oct 2007
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posted
BTW Olive Leaf Extract has been shown to inhibit replication of multiple different murine leukemia viruses. However, the 50% inhibitory concentration of calcium elenolate required is impossibly high. Its still possible that lower concentrations over an extended length of time would be helpful though.
Certainly some people with CFS have reported improvement with OLE, might be something to it.
Posts: 195 | From Manchester, CT | Registered: Jun 2008
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Marnie
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posted
Viruses do not have cell walls like bacteria.
I wonder if viral proteins could be present as a tiny part of bacterial outer cell wall proteins (long chains of amino acids) and when the bacteria are destroyed, a protein chain - tiny one made from amino acids - remains.
In other words can a bacterial infection -> an ongoing viral infection?
I've often wondered if HIV is "part of"/remaining part of the original syphillis spirochete.
I wonder if the genetic sequence of the proteins in HIV match a tiny portion of the genetic sequence of any proteins in s. spirochete?
The S. spirochete is actually much more complex than Bb.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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posted
If the genetic sequence of HIV or MLV matches a tiny portion of the genetic sequence of s. spirochete, that would be interesting in an evolutionary sense but it doesn't not really suggest that the viral proteins are part of the outer cell wall proteins. There are many viruses and many bacteria that have similar genomic sequences. The retrovirus that DeFreitas found has 1 out of 4 identical genes to HTLV-2. Heck we share 98% of our genome with monkeys.
A much more sensible way would simply be to have researchers look for this. Considering that DeFreitas actually saw the retrovirus inside the mitochondria of our cells under a microscope 20 years ago, if this retrovirus is attached to any part of any bacteria, Dr. Mikovits and company should be able to plainly see this.
Posts: 713 | From Los Angeles | Registered: Oct 2007
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D Bergy
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posted
Another study that implicates the murine norovirus and Crohn's disease.
If you have symptoms of Crohn's and Lyme, you may want to consider this as a possibility.
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