nenet
Frequent Contributor (1K+ posts)
Member # 13174
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: 96239 | From Texas | Registered: Feb 2001
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
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
Frequent Contributor (1K+ posts)
Member # 22022
posted
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
Frequent Contributor (1K+ posts)
Member # 19922
posted
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: 13171 | 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: 691 | 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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