posted
I have tested positive for both plus babesia. Any advise? My Lyme doc wants to treat me using AIDS virus drugs. I have been taking meds for lyme and babesia for 2 years and just tested positive for XMRT virus.
-------------------- Kitty Lyme, Babesia, XMRV virus Diagnosed 2008 Mepron, Zithro, Cepaflexin, Fluconozol, Vitamin, Herb therapy Posts: 65 | From Kansas | Registered: May 2009
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This is a blog by an MD and her daughter who both went through years of antibiotic therapy for Lyme, then tested positive for XMRV. They are now taking antiretrovirals (HIV drugs).
They are six months into treatment and have improved dramatically.
Unfortunately, the mom has bad feelings toward ILADS and the Guidelines. She never felt better during Lyme treatment, and feels XMRV was her problem all along.
Her daughter, however, got better during Lyme treatment then relapsed.
So be prepared for that aspect of her blog. But the info she provides on her trial of antiretrovirals may help you decide whether to follow that path.
posted
I think I know who your doctor is....is he an Infectious Disease Doctor who presented at a lyme conference a few months back, and is very literate on XMRV and lyme.
He spoke about his use of the HIV drugs, and was only a few weeks into trials, but had begun to have great success.
I also have CFS and many elevated viral titers, and was considering what to do for the viruses. Fortunately, babesia treatment for me, has given me much of my health back.
Have you improved with your lyme/babesia treatment? Does your doctor feel that you must lower your viral titers to get the immune system back in balance?
I'd be interested in learning more about your protocol, and following your progress, if you choose to use the HIV drugs. I do remember him saying that one of the drugs had virtually no side effects (which surprised me). Don't know about the other.
Posts: 964 | From san diego | Registered: Oct 2009
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Lymeorsomething
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posted
Pick a camp. Some say XMRV causes issues while others do not. My LLMD termed the virus an innocent bystander. Studies have been mixed too.
posted
From the recent NIC conference it is well established that this is an issue with CFS patients. The CDC, NIH, NIC and over 12 top Universities are noe starting treatment options for this. Austrailia, New Zealand and Canada have all stopped CFS, Lyme, and Fibro patients from giving blood. We are the only ones who are not.
The results of some other labs that had negative results have been determined as contamination problems with their testing.
This is as of Sept 19th.
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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posted
Of all the studies on detecting XMRV in CFS patients, please choose ones that used the right methodology. It has already been established that XMRV has a low copy number in peripheral blood, so labs that do not use amplification will likely not detect the virus.
This pdf details some more studies that have found XMRV in CFS patients, including Dr. Hanson and Dr. Bell's study and lrsiCaixa Foundation in Spain.
Any study that finds zero XMRV in both CFS and healthy controls is obviously not using the right methodology. Even the FDA/NIH has found MLV variants in healthy people.
Posts: 713 | From Los Angeles | Registered: Oct 2007
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posted
Have you tried less toxic antiviral meds such as valtrex? Personally I would do that first rather than going right to the AIDs meds.
Also have you taken any immune boosting supplements such as transfer factor or possibly naltrexone?
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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BoxerMom
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Retroviruses are different from viruses. Valtrex would be useless against XMRV.
XMRV patients have followed the same paths as us. Often, they ARE us. They've taken every supplement under the sun. If supplements could get them well, they'd all be Olympic athletes by now.
I'm not trying to discourage supplement use. You should see my countertop! But I think it's time the medical system took us seriously as the multiply-infected patients that we are. We need treatment regimens that deal with our infections and restore us to health.
I'm relieved that some doctors and patients are taking XMRV seriously, and getting started with drug trials. The new antiretrovirals are not nearly as toxic as the older ones, and the dosages are lower and cause fewer side effects.
After living like the walking dead for 15 years, I would gratefully take a few rounds of antiretrovirals if I thought I could get my health back! XMRV treatment could be a huge step toward getting people their lives back!!
Yes I realize that XMRV is not the same type of virus as CMV, HHV-6 etc -- but do those more common viruses respond to antiretroviral drugs or just the more common antivirals such as amantadine and valtrex?
I would think it would be highly likely some patients would have both XMRV and the more common viruses.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Thank you Boxermom. It's refreshing to hear some basic understanding about retroviruses here. It seems many patients on this forum thing a retrovirus is in the same category as a herpes virus or a spirochete.
Feline Leukemia Virus, which has been identified as being comparable to MLVs, caused death in 3-5 years when it was an established infection, despite the fact that 60-80% of adult cats exposed to FeLV do not develop persistent infection largely due to vaccination. Read about it here: http://regist2.virology-education.com/1XMRV/docs/07_Sparger.pdfPosts: 713 | From Los Angeles | Registered: Oct 2007
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BoxerMom
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posted
Bea - I know you know your pathogens. Honestly, I was surprised by your post.
Yes, they have opportunistic infections like we do. But if XMRV is the primary, disabling infection, then that's the one that needs to be treated. Often, when the primary infections are treated, the body can take care of the common viruses.
I am excited by the XMRV findings, and waiting expectantly for patient feedback. The idea of people getting their lives back (or even just finding improvement in quality of life) just thrills the cr** out of me!!!
For me, it was Lyme and co-infections. For some, it may be XMRV. (I could be XMRV, for that matter. I haven't tested yet!) I just want to see this malingering-for-decades-with-CFS become a thing of the past!!!
Kitty - For what it's worth, I am waiting on XMRV testing because I am still responding to Lyme treatment. If I reach a plateau in treatment and don't feel sufficiently improved, I will test for XMRV. And I would not hesitate to take antiretrovirals with an experienced doctor.
If I were you, I would get my Babesia under control first. It's possible your body can take care of the XMRV once the Lyme and co-infection load is reduced. We just don't have all the information yet!!
But if you feel like you've treated long enough and no longer improving, consider the antiretrovirals. Read the blog I posted. It's very informative.
posted
Very logical way of conceiving treatment Boxermom. If I hadn't treated all the other secondary infections already, I'd definitely be doing that now. All I have left is the retrovirus(es).
This is not to discount the importance of them at all. In fact, what kills AIDS patients are the secondary infections like HHV=6 after their immunity has been decimated. The ARVs themselves do nothing against herpes viruses because they inhibit reverse transcriptase, integrase, protease, and other enzymes necessary for retrovirus replication. The herpes virus does use host cell enzymes (DNA-dependent RNA polymerase) to replicate, but its viral DNA doesn't get reverse-transcripted like retroviral RNA (because it already is DNA!) nor integrated into our host cell DNA like the retroviral DNA does, and hence herpes viruses don't use any of those enzymes that antiretroviral drugs inhibit. The immunomodulatory drugs may work on the herpes and other viruses though
Posts: 713 | From Los Angeles | Registered: Oct 2007
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Lymeorsomething
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posted
It's all intriguing but the bottom line is that no one really knows if XMRV is causing disease or just chilling in patients with compromised immune systems.
One of the participating MDs mentions as much: ``We don't know that XMRV causes any human disease,'' said Dr. Robert Silverman of the Cleveland Clinic, who was part of the research team that discovered the virus in prostate tumors. http://www.cancer.gov/ncicancerbulletin/092110/page5
At the same time, I know what it means to be sick for a long time and desperate for answers. So I would probably attempt some kind of treatment approach if I did test + for the virus.
Some kind of standardized test should be available in a year or so according to the article...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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Hoosiers51
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posted
Interesting discussion. Reading, but I don't have any input..... Posts: 4590 | From Midwest | Registered: Jun 2008
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BoxerMom
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posted
Lymeorsomething - Patients with positive XMRV labs are responding to antiretrovirals! And I mean getting well, not just having die-off symptoms. That is a big, big deal.
So, maybe it's not XMRV, but it's definitely a retrovirus causing their symptoms. My money is on XMRV.
My guess is that it will turn out to be like Lyme and co-infections: some carry it asymptomatically but others, especially those with additional infections and compromised immunity, have symptoms and require treatment.
I say this because stress is such a big CFS trigger. That would imply that in some patients, the retrovirus was already on board, but became more active during a time of fluctuating cortisol and decreased immunity.
That would be good. It would mean that once our pathogen loads come down and our immune systems recover, we can manage a certain amount of XMRV on our own, without needing indefinite treatment like in HIV. But I could be wrong.
Like I said, I am VERY excited to see the outcomes of these early trials. And I am pleased to see doctors and patients stepping up to treat, even without knowing the full scope of XMRV illness.
Like you said, when you've been sick for so long, what have you got to lose?
posted
The bottom line is this: every human retrovirus ever discovered has turned out to be infectious. Feline Leukemia Virus, possibly the feline analog of MLVs, caused death in 3-5 years when it became an established infection. Vaccination has lowered the incidence of established infection dramatically in the last 25 years. The very fact that a successful vaccine was developed for FeLV, a gammaretrovirus like MLV, gives us hope that a vaccine can be developed for MLV where it cannot for HIV for various reasons.
When in doubt about causation, treat and see what happens. Clinical trials absolutely need to happen now. Of course gov't officials and researchers are going to say association or even correlation doesn't mean causation, because well it doesn't. However, statistical analysis works on a different plane than common sense.
Once again, it seems people that keep telling XMRV+ patients to put on the brakes have no understanding about the BASIC BIOLOGY of retroviruses.
However, I do not share Boxermom's enthusiasm about the ARV protocol as currently constituted. I have only heard of a few patients that have gotten better (including Dr. D-J and her daughter) and many that have stagnated or gotten worse. It is a different type of retrovirus than HIV and mechanism of infectiousness may also be wildly different, giving HAART (the flagship treatment for HIV) limited value. The irony is that the HA in HAART stands for "highly-active" and MLV/XMRV seems like a very slow-replicating, largely inactive retrovirus with a low copy number in the peripheral blood, unlike HIV. Some researchers have said the envelope protein is the main determinant of pathology and virulence, so blocking its receptor site on the surface of the host cell (to prevent viral entry) or preventing the assembly of it inside the host cell via a protease inhibitor (to prevent viral assembly and release) would be logical areas to conduct in vitro research and possibly extend to clinical trials
Posts: 713 | From Los Angeles | Registered: Oct 2007
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posted
Thanks for the conversation and info. I have been treating lyme and babesia for 2 years--tried to go off the babesia protocol and crashed and burned. How long can one take Mepron??
nspiker is right about my Lyme doc. He is very excited about starting the AIDS meds. And I hope he is on the right track with XMRV. He has many patients in the same boat as me. If the meds would help relieve the CFS it might be worth it but I really kind of feel like a lab rat!
-------------------- Kitty Lyme, Babesia, XMRV virus Diagnosed 2008 Mepron, Zithro, Cepaflexin, Fluconozol, Vitamin, Herb therapy Posts: 65 | From Kansas | Registered: May 2009
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posted
I would be very cautious. I have been following all the XMRV stuff since I was first diagnosed with CFS before testing positive for Lyme.
Some of this thread makes it sound like the antiretrovirals have been a miracle for people but from what I have seen that is not true.
It was my impression that a few saw some improvements but that overall the HIV antiretrovirals don't appear to be effective for this.
There have also been several people who have gotten very ill from them.
These are some serious drugs so I would do a LOT of research before becoming a guinea pig for that.
I have also read that some of the researches looking into XMRV has advised caution with experimenting with these drugs since they haven't done trials with them yet. They are concerned that experimenting with them incorrectly could cause people to become resistant to them all if/when they do find the proper meds/combinations.
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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BoxerMom
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posted
Hmmmm...I don't recall being excited about the current ARV cocktail for XMRV. I recall being excited about the possibility of people getting their health and their lives back. Is that the same thing?
It took a decade of research and trials to come up with the triple-drug cocktail that changed HIV from a fatal to a treatable illness. Then it took another decade of research and trials to establish combinations and dosages that reduced the serious side effects of HAART therapy.
Treating XMRV patients with the same ARV combinations as HIV patients is obviously not ideal, but it's what we have right now.
We have so much to learn about XMRV. But I support patients who want to try the currently available regimens. Most feel as if they've exhausted all other options to return to a state of health that allows them to live reasonably full lives.
Kitty - You are right. You are a lab rat. Be smart. If you have B.duncani, you may need much more Babesia treatment. The B.duncani patients take a long time to recover.
But if you trust your doc and want to try antiretrovirals, that is another option. Again, be smart. Do your homework. (I know. It's hard to assimilate so much information when we're sick.)
FWIW, I've watched B.duncani patients treat for over two years with Mepron combinations. They are getting better, but are not fully recovered. I don't know their XMRV status.
One poster on this thread was very enthusiastic about treatment. The thread has been very balanced so who are "the people on this thread" you're referring to? I see no implications of miracles here, only frank discussion of the possibility of people getting their lives back.
The cautionary tales about researchers telling patients to wait have been repeated ad nauseum. Duh they are researchers! They are not physicians and causation has not been determined. They would get their grants revoked if they told patients to start treating with non FDA-approved drugs. Did a single gov't researcher publicly advise patients to take an off-label drug for AIDS when there were no FDA-approved drugs available? Moreover, are govt researchers now going ahead and telling lyme patients to treat with long-term antibiotics?
Your point about doing your own research before doing any experimental treatment is well-taken. So is your point about increasing resistance with the wrong combination of drugs. No need to lace it with time-worn soundbites from government officials that don't have our best interests in mind.
Posts: 713 | From Los Angeles | Registered: Oct 2007
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If you go back and read this thread you will see there were several comments made in this thread by a couple of people that mentioned people having great results with antiretrovirals and how they are less toxic now and how one has virtually no side effects etc etc.
I was just concerned that the original poster was not getting all of the info about antiretrovirals and was not being made aware of how serious these drugs are.
Also this thread was not well balanced as you said it was. The only thing that was balanced was the argument about XMRV itself and if it causes disease. That was the only thing being debated.
If you go back and look before my original comment there wasn't much being discussed about the antiretrovirals themselves.
That is why I wanted to just advise caution to the original poster so that they would be aware of possible problems with this treatment.
Even you mentioned the same thing that I did about the treatment and how only some have had improvements while many have gotten worse.
A good portion of this thread was debating XMRV itself so I just didn't want the original person to confuse support of XMRV as support of antiretroviral treatment.
Also...I am clearly aware that physicians and researches can not promote off label drug use when causation has not been determined. I get that and understand that. That was not my point. My point was what I said after that about drug resistance.
I mentioned that because one of the points physicians and researches used to advise caution about experimental use was drug resistance which is actually a valid point and one to be considered for anyone contemplating this.
Anyhow...it is certainly their decision to make if they want to try the antiretrovirals or not. If someone has researched it and feels it is the best option for them then I have no problem with that.
All I was trying to do is make sure that they had all the info to make this decision. I was just concerned that the use of these drugs was being portrayed differently in this thread then what has actually happened.
I wasn't trying to offend anyone or upset anyone so I am not sure why you are so angry with me.
I certainly have no problems with you and in fact usually value (and often agree with) the input that you have given here.
Take Care, Pam
PS...I just slightly edited the original post I made earlier in this thread since it seemed to have struck a nerve. I do still stand by my original suggestion of caution and research when contemplating this treatment (or any treatment for that matter).
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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