I am going to try to get all the treatment reports into this thread. If you know about any that's not here, then please post about it.
XMRV has been found in 30-40% of chronic lyme patients according to the publisher of the Science paper on XMRV (see here). That's why it's relevant, and perhaps interesting to see how it goes with those patients that are receiving treatment.
Personally I think it's could turn up to be the most important co-infection in the chronic lyme patients who aren't recovering. I have been treated for lyme for years, have had a great improvement, but I am still not able to live a live worth living due to symptoms.
When looking at XMRV treatment from a distance, I think that the worse outcome would be no reaction whatsoever from treatment. What we are seeing, in this small number of persons doing their own trials, are reactions. Both on the up and downside. What causes the 'down reactions' is debatable.
Anyway, here are the treatment reports that I know about. I have summarized, simplified and added bolds etc to some of the text in the quotes. The reason I just don't post a link to the threads, and nothing else, is because the threads have over five hundred posts, so it's too much to read for most people.
This person posts that she does not have positive tests, but because false negatives do happen, the patient decides to try to give treatment a go.
25th of March. Begun treatment with Retrovir 300 mg x 1 (that is half the dose that HIV patients use - some mean that such a low dose is risky due to possible resistance problem).
She posts that the discoverer of the possible link between XMRV and CFS knows of three people in the US on Retrovir 300 mg for CFS. They noticed improvement in 2 weeks. She's pretty sure they all tested positive for XMRV.
A study is posted which shows that (in vitro) Retrovir is 2.5-folds more potent against XMRV than HIV (link)
quote:2nd of April, has nausea problems. No symptom improvement.
quote:4th of April, I wasn't going to post this yet because it's somewhat transient but I think I am experiencing a little improvement already. Just a tiny bit of improvement in fog and some improvement in stamina. Just a small amount but i think its there. 9 days on Retrovir.
quote:6th of April, Still noticing definite improvements in CFS symptoms on the Retrovir... I wonder if the doc will make me stop the drug.
Some posts are deleted, but I think she experienced about a 25% improvement.
Went shopping in a mall (!). (written as an improvement sign)
quote:9th of April, I am very sure I am not imagining the improvements!
quote:13th of April, Hi all. I am feeling a sort of fatigue and lethargy i haven't felt before. Perhaps the Retrovir is causing this. It is hard to explain. Muscles are sort of achey too. I just want to lay down very badly. Also feel a little fluish in my throat and lungs. The CFS itself is still better but something is really pulling me down the last 2 days.
quote:14th of April Last night, I started feel a little more improvement in the brain fog... But this morning I am back to the same. I think it will be very slow going.
quote:17th of April Someone writes to her: You say Retrovir got you a 25% improvement. That is good. Perhaps being on it for enough time would get you better. Perhaps even adding Isentress or some other anti-retroviral would get you even more better.
quote:22nd of April Got to try Isentress together with Retrovir. Retrovir is still being used at half the HIV dose, Isentress is begin used at normal doses.
Next weeks Gets a heart rate of 90 +/-. Feels the heart pounding. Gets insomnia problems. Gets restless legs.
Writes this
quote:I have had viral die off before but this feels very different. Just 2 days after I started Isentress... I started getting these really extreme wave of lethargy and now the heart thing, which is still going. At the same time, I really think the Isentress started to help. I had moments of less brain fog and less pounding/inflammation in my head on the drug.
Goes off the two drugs for about a week.
Someone asks her if she had high heart rate before beginning on Retrovir [indicates that she had it on Retrovir, although a heart rate of about 90 is not dangerous].
quote:I have been off Isentress 5 days and off Retrovir for 2 days. I can feel CFS symptoms returning slowly.
The there is some speculation whether or not she's experiecing a IRIS reaction.
quote:4th of May. Begins with Retrovir again.
quote:5th of May. Her heart rate has dropped with 10-15 beats. [I doubt the events are related]
Writes this:
quote:I hope that doesn't happen [that she can't get Isentress] because I feel pretty bad right now and the Isentress helped so much. Even after two days I could feel the malaise and fog just dissipating. It was so wonderful.
29th of May. Has been on Retrovir 300 mg x 1 for about two months. Has been on Isentress 400 mg x 2 for about one month.
Sums up her situation:
quote:Things seem to improve a little initially but have now worsened completely. Severe fog/swelling, malaise, perspiration, feverish feelings are all back.
[could this be due to the Isentress? We can't know what would happen if she continued with Retrovir on it's own? And could it be a reaction from opportunistic infections when adding Isentress? See IRIS reaction]
She writes that she'll ask her doctor to either add Viread, or if he refuses, to replace Isentress with Viread (at a dose of 300 mg/day). She'll also ask to get the Retrovir in normal doses (she has taken only 300 mg per day so far).
She has heard of other negative responses to Isentress...
Writes:
quote:I am pretty sure that if it [the combination treatment she used] was working, I wouldn't be back to square one right now.
30th of May. Doubles the Retrovir dose, so that it's now 300 mg x 2, which is the standard dose.
The doctors daughter: 11th of March, begun treatment. Most likely with Retrovir 300mg x 2 and Isentress 400mg x 2. Six weeks into treatment; experienced a surge of energy, then an upsurge of symptoms I [the doctor] consider to be inflammatory and then she returned to about baseline. Since her inflammatory symptoms were continuing, she decided to stop Isentress for five days, and experienced an almost immediate worsening of symptoms, in her case receptor insensitivity (hypoglycemic episodes), both worse than baseline. So a rebound...
She went back on isentress and those symptoms improved again very quickly, about a day.
The doctor: 4th of March. Begun with Retrovir 300mg x 2 11th of March. Added Isentress 400mg x 2 29th of April. Added Viread, dose unknown 2nd of May, posts this:
quote:I had a mild neurotoxic reaction to starting Retrovir, that has subsided incompletely (still have peripheral paresthesias increased from baseline). Cheap stuff. Easy to tolerate.
About a week after starting Isentress, so during the third week of treatment, I experienced a noticeable reduction in malaise, always a prominent symptom for me. During the beginning of the sixth week, I experienced an increase in energy and ability to be semi-functional for several hours a day. Previously, I was essentially couchbound and going to town was a monumental effort. I can now run to town for a few errands and it's not a big deal. Other symptoms are better as well. Neurologically, I think I am a little worse, but it is manageable.
I posted that I had started Viread a few days ago. The last day and a half have been very bad for me. Definitely toxic. I am reporting now because I believe that this is how it's going to be. This is NOT going to be a bed of roses. I have been sick a very long time.
quote:I ended up stopping viread after five days. The symptoms that I experienced when I added viread were more consistent with a flare of my disease than anything to do with the known toxicity profile of the drug.
(...)
I am following eight X+ patients from a distance (and one long term CFS patient who has chosen to start treatment with a negative culture). It is a mixed bag so far, but the two people I know of that started Isentress alone didn't do well in very short order (days).
Retrovir alone seems to bring about a very modest improvement with little problems over a month or so, which is when the three patients I was following who were on it alone added Isentress. Very small numbers and completely uncontrolled, but it's all there is for now.
It is possible that Isentress is such a potent inhibitor of XMRV integrase that there is a build-up of unintegrated DNA in the cell cytoplasm. DNA in the cytoplasm could activate production of interferons and thus, a resultant inflammatory response. That is how it felt to me.
Personally, I feel best about Retrovir right now of the three drugs available. It prevents replication at the most basic point in the virus' life cycle. It is the broadest spectrum if you will. It has been around the longest. There is vast experience with it over many years of treatment. It may be that Isentress requires reduction of viral load before adding. Or it may be that we are like the genetically susceptible infected mice for whom it isn't the right drug (Raltegravir [Isentress] autoimmunity - summarized version).
I have heard from people considering Retrovir alone, sometimes at below HIV doses. I would still prefer more than one drug. We can't know anything about how readily this virus will become resistant to drugs. We don't know anything about XMRV's RT error rate. We don't know anything about viral load in target tissues.
I stayed off both drugs, on Retrovir alone, for 5 days. I continued to get sicker until I was well below baseline. Last night it seemed clear to me that I had been better off on the Retrovir/Isentress protocol, so I decided to go back on Isentress. Amazingly, I feel much better today. The horribleness seems to be fading into the background again. I am reporting now because I don't know how it is going to turn out. But it is an almost A-B-A experiment. However the experiment turns out, what has happened already greatly surprises me.
21st of May. Posts this:
quote:I started Retrovir alone and added Isentress a week later. I experienced a significant reduction in malaise after a few weeks. At about six weeks, I had a surge of energy and reduction of many odious symptoms that I consider to be vasospastic in nature, as well as a reduction in air hunger which has been ever present for a long time. I tried to add Viread at eight weeks, probably because I felt that I had plateaued.
At the same time I received a couple of reports of people who had started Isentress alone and became suddenly worse.
I continue to experience much less malaise than before starting.
My feeling is that if I were starting now, I would probably start with Retrovir and Viread, wait a while and then try to add Isentress. Isentress may turn out to be not the right drug. But for the moment, it's what we have.
And nothing has ever dragged my illness around like Isentress. I find that completely encouraging for the long haul. I would also like to make clear that the adverse experiences that we have had are not consistent with the very well known direct toxic effects of the drugs. I have heard a few reports of people who have tried Retrovir/Isentress in combination and the response is mixed, but it doesn't seem that anyone has lost much for trying it so far. And it's not no response, which would actually be the worst response.
[ 05-30-2010, 02:56 PM: Message edited by: peter j ]
Posts: 275 | From Home | Registered: May 2007
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Liposomal artemisinin and Neem are two natural options that I have heard practitioners using with patients. I would personally much prefer to go down a natural treatment route than starting a life-long RX drug protocol. So much still to be learned though and I'm interested in information such as this. Thanks for posting.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I agree with Scott. Dr C (CFS doctor) is using artesunate & a "swish & spit" method with a form of artemesia. I'm not sure what the swish & spit does. I don't know if it really helps people but I wouldn't want to be a guinea pig for drug trials.
There's still too much that is unknown. I don't mind experimenting with different herbal protocols but drugs are a different matter.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
I treated myself, my wife, and my son for XMRV virus a while ago, using Char Boehm's DNA based frequencies for use with a frequency device.
My son and myself had similar reactions to the treatment, which was a soreness in the intestinal tract, and some other minor sensations. I continued the treatment on myself which brought a gradual reduction in the soreness in the intestinal tract. I have not used it for a while now, but I will be trying it again pretty soon.
Both my son and myself have autoimmune disease, but not Lyme. I actually was testing to see if it was a factor in Crohn's disease. I still do not know the answer to that question.
My wife, who does have Lyme did not respond to the frequencies in any way while is was being run.
Later on she did have an outbreak of Shingles, which may have been related to the XMRV treatment. Someone else old me that a viral activation can happen when using antiviral drugs such as AZT. If you can draw a parallel between the two treatments, then the reaction does not seem so unusual.
I then treated her for Herpes Zoster using the listed frequencies for this virus. The Shingles dried up and went away.
While none of this is conclusive evidence of anything, if I had to guess, I would say myself and my son may have had the virus, but my wife who has Lyme probably did not have it.
That does not mean other Lyme patients do not have the virus, but it could be part of a more complex case of Lyme.
Nothing solid here, but it was an interesting experiment.
Dan
Posts: 2924 | From Minnesota | Registered: Aug 2006
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
Lactoferrin inhibits dendritic cell-mediated HIV-1 transmission by blocking the binding of the HIV protein gp120 to the cellular receptor DC-SIGN, which is a critical binding interaction that never changes regardless of strain.[4]
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
Scott, I am glad you appreciated it. They are long threads, and I did my best to make a summary short enough to be readable :-)
If someone wonders why the drug names sometimes are bold, then the answer to that is simple: It's because it seems to me that those who have used Isentress have got a negative reaction, and making the names bold, it would be easier to see that.
I know it's few people. But none the less I'd like to hear others thoughts about how and why it occurs.
It's often that people on these boards can see things from a different angle, so opinions, thoughts or theories are appreciated.
Posts: 275 | From Home | Registered: May 2007
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posted
don't think arteminisin or artesunate (recommended by Cheney) do much on XMRV honestly. I took both long-term but was still positive via culture.
Cheney did say a few of his XMRV-pos patients were XMRV-neg post umbilical cord stem cell transfusion.
Posts: 713 | From Los Angeles | Registered: Oct 2007
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Good news, a govmt agency in midwest used this Lyme expert for a presentation and are circulating his info....please note the strong statements about xmrv!! (this is just an excerpt from a longer presentation focused mostly on lymes)
Joseph J. Burrascano Jr., M.D. LYME DISEASE The Nuts and Bolts.
*Ticks may carry DOZENS of potential pathogens- NATURE'S DIRTY NEEDLE! *One tick bite can result in simultaneous co-infections by different germs *Spirochetes (Lyme) *Parasites (Babesia) *Bacteria (Ehrlichia, Anaplasma) *Mycoplasmas (Gulf-War and Chronic Fatigue germs) *Viruses (T.B.E., West Nile Virus) *Worms (nematodes)? XMRV- A New Retrovirus- Is This Another Co-Infection? *Xenotropic murine leukemia virus-related virus (XMRV) was first isolated from prostate cancer patients
*Dr. Judy Mikovits looked for XMRV in CFIDS patients. She found it in only 3.7% of healthy controls but 95% of CFIDS cases were antibody positive and 68% were PCR-positive. Overall, 98% tested positive! *Recently, the FDA has independently confirmed this study *She and collaborating clinicians also found XMRV in Lyme, fibromyalgia, atypical MS and autism *This is a retrovirus (as is HIV) and theoretically can cause or add to many symptoms and immune defects as seen in these illnesses, as well as in Lyme *Three avenues of treatment are being studied: *Anti-retroviral agents, as used in HIV *Artesunate *Antiviral herbs
posted
I'm more interested how the GcMAF trials go. I'd rather have it cured.
To all: google GcMAF
It cures HIV/AIDS and it's real. Just look at the publications on pubmed.gov.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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posted
Important information regarding candidacy for gcmaf:
Gc PROTEIN-DERIVED MACROPHAGE ACTIVATING FACTOR (GcMAF) STIMULATES ACTIVATION AND PROLIFERATION OF HUMAN CIRCULATING MONOCYTES M. Ruggiero*, S. Pacini**, N. Yamamoto� *Department of Experimental Pathology and Oncology, University of Firenze, Italy **Department of Anatomy, Histology and Forensic Medicine, University of Firenze, Italy �Division of Molecular Immunology and Immunotherapy, Socrates Institute for Therapeutic Immunology, Philadelphia, PA, USA THPE0051 Background. Vitamin D binding protein-macrophage activating factor (GcMAF) is a powerful stimulator of the immune system. Its effects were studied in conditions where macrophage/monocyte function is deficient, from HIV infection to cancer (Transl Oncol 1:65-72, 2008; J Med Virol 81:16-26, 2009), whereas the effects on monocytes from healthy subjects have not been studied. Thus, here we report the results obtained challenging human monocytes from healthy subjects with GcMAF: we demonstrate that the individual degree of responsiveness is dependent on vitamin D receptor (VDR) gene polymorphisms. In addition, since the signal transduction pathway of GcMAF is not fully understood, we studied the effects of GcMAF on the formation of intracellular cAMP. Finally, we studied the effects of GcMAF on normal and cancer cell-induced angiogenesis in the chick embryo chorioallantoic membrane (CAM) assay. Materials and Methods. GcMAF was prepared by Prof. N. Yamamoto. Peripheral blood monocytes were isolated from healthy subjects using Ficoll-Paque gradient centrifugation. 100oeL of cells from donors harbouring different VDR polymorphisms (identified by BsmI and FokI restriction enzymes; see Adv Chronic Kidney Dis 15:186-90, 2008) were cultured with GcMAF for different time intervals (30 min - 96 h). Each condition was replicated in quadruplicate and each subject served as internal control. Cell proliferation and viability were assessed by the cellular reduction of tetrazolium salts to colored formazans and measured as optical density (Leuk Lymph 44:1957-62, 2003). cAMP was measured using the Cayman Chemical cAMP assay. CAM assay was performed as described in J Environ Pathol Toxicol Oncol 28:85-8, 2009. Results. Normal murine and human monocytes, incubated with 10 pg GcMAF/ml for 30 min and cultured for 3-6 h, were highly activated and produced 30-fold increased superoxide generation (Table 1). In fact, subjects harbouring homozygous ``bb/FF'' genotypes showed the highest response and 100 pg GcMAF/ml stimulated monocyte proliferation to an extent comparable to that achieved by the highest concentration of lipopolysaccharide (1 μg/ml), taken as positive control. Heterozygous subjects (``Bb/Ff'') showed a smaller, but still significant, response, whereas ``BB/ff'' homozygous did not respond. In subjects harbouring ``bb/FF'' genotypes, GcMAF sustained cell viability for about 98 h whereas un-stimulated cells were no longer viable after 48 h, as if, in those subjects, GcMAF had rescued monocytes from apoptosis (Cell Death Dis 1, e30; doi:10.1038/cddis.2010.8, 2010). In preliminary experiments with healthy donors, however, we had noticed that individual responses to GcMAF significantly varied. Therefore, donors were selected for VDR genotypes and we observed that the ``b'' and ``F'' alleles of the VDR gene were associated with the highest responses in terms of cAMP formation and proliferation (Tables 2 and 3). Chronic HIV infection is associated with deregulated angiogenesis possibly resulting in some of the pathological processes that occur in AIDS patients (Angiogenesis 5:141-51, 2002). In the past, it was demonstrated that GcMAF inhibited growth factor-induced cell proliferation, chemotaxis, and tube formation in vitro by using cultured endothelial cells and in vivo by using a mouse cornea micropocket assay (J Natl Cancer Inst 94:1311-19, 2002). Its effects on CAM assay (i.e. on an entire developing embryo), however, had not been studied. Table 4, shows that 1 ng GcMAF/ml (i.e. a concentration 10-fold higher than that required to stimulate monocytes) completely inhibited the angiogenesis induced by prostaglandin E2 or by a human breast cancer cell line, MCF-7. GcMAF alone did not modify basal angiogenesis or chick embryo viability and development. Acknowledgements: this study was subsidized by grants from the University of Firenze to M.R. and S.P. Author for correspondence: Prof. Marco Ruggiero, MD, PhD: [email protected] Monocytes activated with 10-100 pg GcMAF/ml developed a large amount of Fc-receptors as well as significant variation of receptors that recognize IgG-bound and unbound HIV virions. Thus, monocyes/macrophages activated by GcMAF preferentially phagocytize IgG-bound HIV virions. Thus, monocyes/macrophages activated by GcMAF preferentially phagocytize IgG-bound HIV virions. Figure 1 Discussion. These results elucidate the cellular and molecular mechanisms through which stimulation of the immune system leads to eradication of HIV (J Med Virol 81:16-26, 2009; Figs 1, 2 and 3). In fact, we demonstrate that GcMAF has a potent mitogenic activity in vitro and these data are consistent with the observation that intravenous administration of GcMAF increased the systemic cell counts of the activated macrophages to >200-fold. In addition, we demonstrate for the first time that the response of human monocytes to GcMAF is dependent on VDR gene polymorphisms. It is worth noting that the alleles ``b'' and ``F'' are also associated with the highest sensitivity to vitamin D; a convergence of the vitamin D and GcMAF signalling pathways can thus be hypothesized. Thus, domain I of GcMAF complexes with vitamin D and then binds to monocytes. However, gene-cloned domain III alone fully activates monocytes in a manner identical to entire GcMAF. Whatever the case, these results can prove instrumental in identifying those HIV-positive subjects that could benefit the most from GcMAF treatment. Figure 2 Figure 3
Posts: 713 | From Los Angeles | Registered: Oct 2007
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posted
I'm glad there is someone else here that is looking into GcMAF.
I feel less alone.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Peter said... "This person posts that she does not have positive tests, but because false negatives do happen, the patient decides to try to give treatment a go."
In this area, 100 patients with chronic Lyme were tested for the virus.
Only one tested positive.
Many more people tested positive for Babesia, Bartonella and other TBD's.
We don't know if and when those people are treated for their actual infections if the body will be able to eliminate any viral infections that still linger or if they will even know they are carrying it, if they still are.
Before you treat without knowing what you have or don't have... please be sure that is what you want and need to do.
I'm with Kday: I'm more focused on gcmaf vs. antiretrovirals. I believe HAART is a dangerous road to go down right now, and although I respect Sue's opinion I don't second her dismay that more people are not badgering their doctors about these highly toxic drugs. Gcmaf seems to be a comparatively high-risk, low reward drug (if we can even call it that) because it theoretically targets all infections.
quote:In this area, 100 patients with chronic Lyme were tested for the virus.
Only one tested positive.
Many more people tested positive for Babesia, Bartonella and other TBD's.
Can you provide a link or source to this information? WPI is saying out of 1000 CFS patients sample, 800 are positive for this virus. I'm not sure if this updated testing is based on the serology (antibody) assay or culture, but the serology is far more sensitive and not available commercially yet.
Posts: 713 | From Los Angeles | Registered: Oct 2007
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posted
I've been using the anti-retrovirals for (all of them and several combos). I don't believe they did much at all except induce a few (negative) neurological changes which are side-effects of the medicine. Really, I don't feel much better at all after using them for nearly 9 months. Horrible.
I am interested in GcMAF if anyone has heard of success stories... that are easily linkable.
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