We need a LIST OF TREATMENT OPTIONS to send to Judy Mikovits

[julius]

monolaurin

 

[Rrrr]

Peptide T, or, rather, its 3rd generation: monomeric DAPTA.

for more info, see the below post from the Peptide T thread.

April 24th, 2010 11:32 PM #85
Mark Lloyd-Fox
My name is Mark Lloyd-Fox. I am VP of Global Partnerships and Coalitions at RAPID Pharmaceuticals, AG, which is developing monomeric DAPTA (an active 3rd generation proprietary formulation of Peptide T) for HIV disease. The recent discovery that XMRV is the causative agent of CFS provides a scientific rational for the fact that government studies many years ago found profound neurocognitive improvements in CFS patients, because this virus is related to HIV. RAPID is now studying whether monomeric DAPTA can successfully block the XMRV virus in the same way that it works in HIV in the test tube. RAPID is interested in organising FDA approved, controlled clinical trials of monomeric DAPTA for CFS as soon as a clear mechanism of action has been demonstrated and funding for this use has been secured. Some past clinical trials of Peptide T failed because it cannot be made into a durable formulation (beware of internet offers to purchase Peptide T- only monomeric DAPTA has proven bioactivity by a patented technology developed by Drs. Pert and Ruff for RAPID which they helped found). I travel throughout the US and Europe for RAPID and would be delighted to meet any interested parties who feel that they can contribute to the scientific study.
We are essentially peptide specialists with all of our scientific and financial resources vested in our HIV therapy. We have other drug candidates for other conditions using the same technology and CFS is a primary next step for RAPID. We are currently researching possibilities within the world of CFS for suitable scientific specialists and funding partners so that we can gear up to effectively address CFS using this remarkable peptide.
MLF.

 

[julius]

Peptide T, or, rather, its 3rd generation: monomeric DAPTA.

Judy is already working together with RAPID on Peptide T. She mentioned it once in the teleconference with Dr Cheney. It is also mentioned in one of the WPI releases.

As far as I know, it is the only treatment that Judy has specifically named as a candidate, so I am really interested in it.

 

[SunnyGal]

Lauricidin (www.lauricidin.com -- I've had 3 doctors tell me that they think Lauricidin should hit XMRV)

Betulinic acid -- http://www.ncbi.nlm.nih.gov/pmc/articles/PMC90240/
It has anti-cancer properties as well as anti-HIV properties.
My doctor has me on this kind of betulinic acid, again telling me that it would address XMRV -- http://plantstemcells.net/

Definitely want to hear about Peptide T and GC-MAF.

Sunny

 

[Dreambirdie]

Yes, Lauricidin or mololaurin, and Amy Yasko's Simplified Protocol for glutathione depletion and methylation improvement.

 

[leaves]

the problem with many supplements (olive leaves, licorice, monolaurin etc) is that in vitro im sure they kill xmrv (they kill HIV) but in vivo not so sure; there it could have no effect at all or just limited to the gut and not the blood stream, etc.
Even if the compounds are active, they may have to be transformed in such a way that the body does not break them down and that they actually get the chance to target the pathogen.
hmm i guess I am just hoping for clinical trials.....

 

[Frickly]

No....this was my first thought. Actually, my first thought was that there must have been some kind of miscommunication here as I cannot imagine why WPI would be asking us how to treat XMRV. Sorry, doesn't make any sense to me.

Although I think it is wonderful that Judy wants our input, I guess I'm a bit confused. Shouldn't the WPI have enough knowledge about this sort of thing - they are the scientists after all. Why are they needing our help on this? Am I alone in thinking this?

 

[acer2000]

No....this was my first thought. Actually, my first thought was that there must have been some kind of miscommunication here as I cannot imagine why WPI would be asking us how to treat XMRV. Sorry, doesn't make any sense to me.

Yeah not to mention most of these supplements have already been proven not to work - at least anecdotally, because we have all taken them and none of us are better! Well, I mean i guess that isn't necessarily true, but for the most part... :-(

 

[Michael Dessin]

For emergency relief

Anti Inflammatory

Pancreatic enzymes

Omega 6 oil especially borage oil and beefs

For long term relief

GcMAF

Peptide T

Neural Therapy

Stem Cells

Ampligen

 

[cfs since 1998]

Shouldn't the WPI have enough knowledge about this sort of thing - they are the scientists after all. Why are they needing our help on this?

I cannot imagine why WPI would be asking us how to treat XMRV. Sorry, doesn't make any sense to me.

She is not asking us how she should treat XMRV, she is asking what treatment options we would like to see tested, or think she should test. The WPI scientists are very busy people and are not omniscient. What is so wrong with accepting ideas? I am happy she is so interested in the patients and is open minded, I don't understand why this should deserve criticism. Most other scientists think inside a box the size of an ice cube.

 

[Frickly]

CFS since, with all due respect, what is the difference between asking us how she should treat XMRV, and asking what treatment options we would like to see tested? It sounds like they are out of ideas and looking for help. Of course, i do not beleive this is the case but only think that Rrrr...worded the post in an unfortunate way. I have always valued all Rrrr's posts and hope she/he does not take offense to my questions and concerns.

The original post is as follows:

Judy Mikovits, in an email to me, said that at this time she welcomes hearing thoughts about treatment options to consider. So I'd like to come up with, on this thread, a clean, uncluttered list of treatment options, meds and natural approaches, for XMRV. Let's try to come up with 25 of the top treatment options to send to her.
I will start it:
1. Spironolactone (it inhibits androgens, and androgens turn on XMRV). Judy said when she gets a few days in the lab, she'd like to design and test this drug on XMRV.
others?

Rrrr.then cleared up the confusion in this post that I missed earlier.

"they don't "need" our help. she did not ask for our help. i told her i had a treatment idea and she said she welcomed it. i gave her mine (spironolactone) and to my shock she said it was a good idea and she wanted to test it in the lab. and then said she welcomes all treatment ideas at this time. i'm sure they have more than enough of their own. but input from expert patients like us can only help expand the pool of ideas! "

I do not understand why you take such offense at my and others confusion about this post. I think it is easy to misinterpret this post and will always speak my mind if I am unclear about something.

Thank you Rrrr....for clearing this up for those of us that were confused.

She is not asking us how she should treat XMRV, she is asking what treatment options we would like to see tested, or think she should test. The WPI scientists are very busy people and are not omniscient. What is so wrong with accepting ideas? I am happy she is so interested in the patients and is open minded, I don't understand why this should deserve criticism. Most other scientists think inside a box the size of an ice cube.

 

[cfs since 1998]

How about Dr. Cheney's treatments, such as pulsed inosine, alternated with wormwood swish and spit?

Also, how about Virastop (Ezymedica proteolytic enzyme formulation)?

I think you meant to put artesunate in there somewhere, which would be a great idea. We know it works in vitro for many viruses and in vivo for malaria and anecdotally on drug resistant CMV.

 

[energyoverload]

I think Spironolactone makes a lot of sense as part of the treatment regime when it is given to men. But I don't get how this would help women to any great extent as they have far less testosterone and thus dihydrotestosterone than men, as their testosterone is produced purely via the adrenal glands, i think. It's odd that if DHT greatly stimulates XMRV and XMRV is hypothetically the underlying factor behind ME, then why, on the whole do more women than men get ME? (although saying this i'm male, but this is according to stats)..

 

[shannah]

I would just like to reinforce the suggestion of lauricidin. This is one of the few substances or medications that we've ever tried that I feel we may be making some headway, albeit slowly, but we're still not up to full dose yet.

Of course, there's no way of knowing exactly what it's targeting but whatever it is, it's something critical. I'm actually getting hopeful that we may be able to walk further than the mail box at the corner this summer.

 

[Jenny]

Minocycline?

Cheney is apparently using it.

Jenny

 

[Rrrr]

hi all,

sorry if my first post was unclear. i hope frickly posting both my posts in one email clears it up.

i'll go back and edit the first post to hopefully clarify things.

NOTE: judy mikovits did not ask me to post a request for treatment ideas online. she simply said she is open to hearing about treatment ideas. it does not mean she is out of her own treatment ideas, it just means she is open to hearing our thoughts too. so instead of me just sending her my 5 or so ideas, i thought why not ask this amazing list of well-researched patients for their ideas, too?!

best,
rrrr

CFS since, with all due respect, what is the difference between asking us how she should treat XMRV, and asking what treatment options we would like to see tested? It sounds like they are out of ideas and looking for help. Of course, i do not beleive this is the case but only think that Rrrr...worded the post in an unfortunate way. I have always valued all Rrrr's posts and hope she/he does not take offense to my questions and concerns.

The original post is as follows:

“Judy Mikovits, in an email to me, said that at this time she welcomes hearing thoughts about treatment options to consider. So I'd like to come up with, on this thread, a clean, uncluttered list of treatment options, meds and natural approaches, for XMRV. Let's try to come up with 25 of the top treatment options to send to her.”
“I will start it:
1. Spironolactone (it inhibits androgens, and androgens turn on XMRV). Judy said when she gets a few days in the lab, she'd like to design and test this drug on XMRV.
others? “

Rrrr….then cleared up the confusion in this post that I missed earlier.

"they don't "need" our help. she did not ask for our help. i told her i had a treatment idea and she said she welcomed it. i gave her mine (spironolactone) and to my shock she said it was a good idea and she wanted to test it in the lab. and then said she welcomes all treatment ideas at this time. i'm sure they have more than enough of their own. but input from expert patients like us can only help expand the pool of ideas! "

I do not understand why you take such offense at my and others confusion about this post. I think it is easy to misinterpret this post and will always speak my mind if I am unclear about something.

Thank you Rrrr....for clearing this up for those of us that were confused.

 

[Forebearance]

I agree with Julius, SunnyGal, Dreambirdie and shannah about the Lauricidin.
People with AIDS already take it. It helps me a lot.

I agree with Wilddaisy about Virastop. It's pretty gentle, but could be good as part of combination therapy.

Rich Van K's methylation supporting supplements

To reduce the inflammation that happens when we take antivirals:
Mold avoidance (especially sleeping outside in clean fresh air)
"Seven Precious Mushroom" extract by Herbalist Alchemist (supposedly increases NK cell activity)

I realize the last three things can't be tested in a test tube, so maybe they're not the kind of ideas Judy is looking for.
Bless her for her open mind!!!
Forebearance

 

[Rrrr]

another treatment idea to consider (i got this from another CFS patient who is very smart and does a lot of amazing research):

Koronis Pharmaceuticals has a novel HIV drug, KP-1461, and we wonder if it might be useable as a treatment for XMRV. it works differently from other antiretroviral drugs in that it actually speeds up viral mutation until the virus reaches an "error threshold" and mutates itself into nonexistence. it is being touted as a potential cure for HIV -- a drug that could actually clear HIV from cells. KP-1461 has shown very low toxicity in trials, and thus might be better tolerated by drug-sensitive CFS patients than other regimens.

 

[dsdmom]

NOTE: judy mikovits did not ask me to post a request for treatment ideas online. she simply said she is open to hearing about treatment ideas. it does not mean she is out of her own treatment ideas, it just means she is open to hearing our thoughts too. so instead of me just sending her my 5 or so ideas, i thought why not ask this amazing list of well-researched patients for their ideas, too?!

best,
rrrr

Hi rrrr,
Thanks for clearing this up - I initially read the post as they needed our help. It made me a bit confused...but your post clears that up and I think they are greating for taking additional input!!!

 

[natasa778]

no one mentioned (I think)

• acyclovir/valacyclovir (is it effective in reducing xmrv load? the same as it is reducing hiv load...?)
  
• bovine transfer factor
  
• actos
  
• low-dose naltrexone (LDN)
  
• enhansa/curcumin

also what Garcia said re chelation, as well as others re lauricidin/monolarin, minocycline/tetracycline, philantus nuriri, lactoferrin...