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November 3, 2009 at 3:06 am #303045Cheryl FKeymaster
Hello all:
As the news about the newly identified virus XMRV may be of interest to some of you, I wanted to post some information regarding this test and the treatment that my doctor has recommended.
First, at my last appointment with my local AP doc, he had integrated the news about the XMRV into his practice and is recommending an antiviral supplement. The test for the XMRV only became available on Monday, October 25. My doctor said that he did not beleive it was necessary to run the test, it is very expensive ($650) and the study about XMRV shows that CFS patients are likely to have it so his rational is to just treat it and not spend the money on the test. Well, I really wanted to know whether I have it so he wrote the orders and I called fore the kit. They are backlogged and don't expect to be able to fill my order for the kit for 6+ weeks. So, I asked if starting the treatment would impact the results, the answer is yes. So, for now, I am going to start the antiviral supplement treatment, and for go the $650 lab work. I would have liked to know if I have have this virus for certain, but I cannot wait 6 weeks to start a treatment that might help me.
The antiviral supplement that my doc has recommended is Monolaurin. He seems to think it is better than the RX antivirals, which I requested. I will try it until my next appointment to see if I notice anything, then I will be more insistant about the RX antiviral.
Cheryl
November 3, 2009 at 8:19 pm #336562nspikerParticipantHi Cheryl,
When the news first broke about the XMRV retrovirus, I thought is was just another wastebasket diagnosis for CFS. I didn't take it seriously until I read that Daniel Petersen, of the Petersen-Whittenmore Institute was behind this finding, along with the Cleveland Clinic and the National Cancer Institute. It certainly will bring much needed attention, and a cause for not only CFS, but many debilitating diseases.
Vipdx/Redlabs http:http://www.redlabsusa.com, is one of the companies testing for XMRV.
I had heard monolaurin mentioned before, but never knew anything about the product. I have been prescribed antivirals like Valcyte and Gancyclovir, but was always hesitant to take them because of the side effects. Can you tell me what brand and strength of monolaurin?
I am very interested and want to order it…..Thanks Cheryl!
nancyNovember 7, 2009 at 8:09 pm #336563Todd WIParticipantHi Cheryl,
Thanks for posting this. I?ve always wondered about the viral component to these diseases. Viral and bacterial infections seem to run together like mono & strep or flu & bacterial pneumonia. Which sets up which? We often treat the bacterial infection and ignore the viral, probably because we have more weapons in the fight against the bacterial infections.
I hadn?t heard of Monolaurin before your post. It sounds like an interesting alternative to the RX antivirals.
ToddNovember 7, 2009 at 9:26 pm #336564MazKeymaster[user=67]Todd WI[/user] wrote:
I hadn?t heard of Monolaurin before your post. It sounds like an interesting alternative to the RX antivirals.
Hi Todd,
I was interested in Monolaurin, too, and found some interesting connections when I did a bit of researching on this supplement. Seems Monolaurin has more than anti-viral props – it is also effective as a bacteriocidal against various bacteria:
http://www.raysahelian.com/monolaurin.html
“Monolaurin was cidal to S. aureus and M. terrae but not to E. coli and K. pneumoniae. Unlike the other two gram-negative organisms, H. pylori were extremely sensitive to monolaurin. Because of their longstanding safety record, origanum and/or monolaurin, alone or combined with antibiotics, might prove useful in the prevention and treatment of severe bacterial infections, especially those that are difficult to treat and/or are antibiotic resistant.”
While doing some unrelated research, I came across a study that came out of Taiwan linking RA and tenosynovitis to Mycoplasma terre.
Considering that M terre is a mycobacterium, not a virus, per say, it is interesting that Monolaurin has also been found effective against this organism. Also against Heliobacter Pylori, which has also been connected to RA.
Perhaps Monolaurin is also useful as more than just an anti-viral? How great, if so!
Peace, Maz
November 7, 2009 at 10:35 pm #336565Todd WIParticipantHi Maz,
M terrae is an interesting find. Generally only affects the bones/tendons of the hands, but this poor guy got it in a knee:
<<<...The patient was commenced on suppressive therapy for persistent effusion and discomfort. Eventually, the M terrae infection was confirmed and he was commenced on clarithromycin, ciprofloxacin, and ethambutol. The triple antibiotic regimen was continued for 2 years. The knee improved but never completely settled. The patient chose to cease all antibiotic medication. The knee remained swollen and irritable, with little chance of eradicating the organism.>>>
AP can be a long road, even when you know what's bugging you.
Todd
November 7, 2009 at 11:12 pm #336566MazKeymaster[user=67]Todd WI[/user] wrote:
AP can be a long road, even when you know what's bugging you.
…to coin a phrase! :roll-laugh: Good one, Todd!
Peace, Maz
January 28, 2010 at 5:28 am #336567Cheryl FKeymasterLast weekend, the lead researcher on the XMRV retrovirus and Chronic Fatigue made a presentation that was video taped and is now available to view online. It is a 1.5 hour presentation, I but listened and watched as I was multitasking in another window of my computer.
One thing that I found interesting was that Dr. Mikovit's said that there are three things that seem to “turn on” the virus, one of those three things was cortisol, the stress hormone. So many of us have illnesses triggered or exacerbated by stress, this was interesting to me. Particularly for those of us who do not improve easily on “plain” AP and must then look for more detailed answers, this seemed like a good lead to me.
Here is the link if you have an hour and a half to kill.
January 28, 2010 at 5:44 am #336568mschmidtParticipantAll I have to say is WOW!! Another topic to discuss with my doctor:shock:
Maria
January 28, 2010 at 3:50 pm #336570caseyParticipantWe have been taking monolaurin for the past 4 months. We have noticed a difference when taking this but i must say for those of you who are going to try it to start slow… like the directions say. I thought that taking a little more than what was specified wouldnt matter but it did. I spent the 2nd day with herx like symptoms, severe. I then slowed down and then worked back up and i have been doing well.
I spoke to the manufacturer/owner of monolaurin personally and he told me about a LLMD ( cant remember his name now) that is presently doing a trial with this added to his protocols. He mentioned other physicians that also use this product.
There are different sellers out there ..like everything else ..beware of phonies. Lauricidin is the one i use. You can research and order from http://www.lauricidin.com
Casey
January 28, 2010 at 4:34 pm #336569A FriendParticipant[user=2]Cheryl F[/user] wrote:
The antiviral supplement that my doc has recommended is Monolaurin. He seems to think it is better than the RX antivirals, which I requested. I will try it until my next appointment to see if I notice anything, then I will be more insistant about the RX antiviral.
Cheryl,
Your post topic on XMRV immediately caught my eye, as I'd never heard of this virus. When I saw your doctor's recommmendation of Monolaurin, bells began to ring.
Several years ago, much new information was being read about on a Yahoo Group with the name: Stealth Virus Support Group. A physician who posted there mentioned the product, Monolaurin. I believe he was the person who did the work on the product. The lady who began this site (a very ill patient herself) tracked her progress with numerous treatments. I don't know what has happened to her, but the site is (or was) still there with all the posts about a year ago. I was able to re-visit the site, as it was still listed under my Yahoo groups.
Thought you might like knowing the coincidence here. And good luck with your treatment.
AF
January 28, 2010 at 8:28 pm #336571MazKeymaster[user=28]A Friend[/user] wrote:
Your post topic on XMRV immediately caught my eye, as I'd never heard of this virus.
Hi AF,
Here are some past threads on XMRV you might find interesting…some very good links in these posts.
http://rbfbb.org/search.php?s=1&q=xmrv
I think what is so interesting about XMRV in addition to its many links to lymphomas, leukemias, prostate and breast cancer, CFIDs, etc, is that I have to wonder if untreated XMRV may even be the reason why there is a greater risk of lymphomas to those using TNF blocking meds and other immune-suppressing drugs? There is this latent, underlying, untreated viral infection that just runs rampant in those kinds of situations. Retroviruses don't have their own DNA and insert themselves into our own DNA switching on all kinds of problems.
Peace, Maz
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