My AZT + RAL Trial

jimbob

ME/CFS84-XMRV+
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thanks for the tip sue, I'm going to fill out the form this weekend and send back to Merck. I hope to get Raltegravir much cheaper than I thought! I also sent my consent form back to gloria today to have my swab and blood draw for the biobank. I was a little selfish and checked the box for cfs only, I guess i'm a little prejudice!
 

jimbob

ME/CFS84-XMRV+
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yes, I know. I was going to fill it out and have her sign it monday. I want to send in my blood draw and swab before I start the Raltegravir though, don't want to mess that up!
 

jimbob

ME/CFS84-XMRV+
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Oh, I forgot to mention this, and you probably already know sue. when I checked for side effects on Merck web site, Raltegravir was the only one with " no " side effects listed. Now I'm really excited!
 

shannah

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Received this today:

[CFS-ME-Fibro] Open letter to the ME/CFS/Lyme communities. Please disseminate.
From: Jamie Deckoff-Jones <jdj88@me.com>Add to Contacts
To: mmi@mentalhealthandillness.com; CFS-ME-Fibro@yahoogroups.com; EuroLyme@yahoogroups.com; nmlymediseasesupportnetwork@yahoogroups.com; EEG Associates Neurofeedback Discussion List <associates@eeglistserver.com>
Cc: Phyllis Mervine <pmerv@hughes.net>; Lymedocs@aol.com


--------------------------------------------------------------------------------



I am a 56 year old physician with ME/CFS/atypical MS. I have a daughter with ME/CFS/Lyme Disease. I was an emergency physician. After I got sick, I recovered enough to have a private practice. I treated brain injury with neurofeedback and HBOT. In that context, I treated patients with Lyme/CFS/ASD/ PTSD/mood disorders. I am also well versed in complementary, alternative, integrative, functional medicines and bioidentical hormone replacement.



When I read the paper in Science about XMRV being highly associated with CFS, it was apparent to me as a physician and a patient that this was it. When I realized that the virus is sensitive in vitro to existing safe HIV drugs, I thought and still think that it is a miracle. In fact, I am stunned by the sudden overabundance of caution in the treating physicians. It would seem that nobody wants to try it. Despite being given the key. Never mind that we are a patient population that has been experimented on for decades.



Frankly, I didn’t see what I had to lose. We are culture positive at VIP Dx. We have tried everything to no avail. So with the assistance of a wise, compassionate friend who is an ID doc, and a smart family practitioner, I started AZT 300mg on March 4 and Isentress 400mg on March 11, both twice a day. It was my intention to wait for some sort of confirmatory data before reporting anything publicly. But watching all that isn’t happening with respect to figuring out how to help the patients, I don’t think that anything should depend on how a few patients do, especially a patient like me who may have been infected for as many as 40 years. I don’t think it is wise to wait while scientists argue about the validity of lab tests. There are too many who need help emergently. HAART is a safe existing protocol for AIDS which includes three drugs which inhibit XMRV in vitro. We even know that the three possible combinations of those drugs are each synergistic in vitro. But, the sickest will die while the scientists try to figure it out, so it seems to me that it is up to the doctors to treat with the information available. As always.



I believe that there is a rationale for treating the sickest patients now. Physicians are allowed to prescribe drugs off-label. I think they should be testing their patients, at VIP Dx, the only commercial lab right now that seems to be able to find XMRV in peripheral blood, using the methods validated in the Science paper. I would be happy to share with any physician willing to consider treating.



I certainly don’t expect that it will be as easy as taking a few pills. There is lots of downstream damage that will need to be treated. But treating all of the problems that have been identified over the years in this patient population will likely be more effective for many more patients than it has been in the past. We will finally be able to identify the commonalities and differences in the various neuroimmune cohorts. Always treat the causative agent if you can. Then modify the host environment to the best of your ability so that whatever is left functions at its highest possible level.



In my opinion, too many of our physicians have gotten caught up in their own ideas and lost track of the goal, which is to get the patients well. As a group, doctors and patients alike, we must support a willingness for the truth to come out, whatever that is. New discoveries have to be incorporated into our thinking as they occur.



I thought that it would be OK to sit back and let the dust settle. Whenever momentous discovery happens in medicine, there is a flurry of resistance from those who have been made wrong. But this is uglier than that. Now the WPI is in need of funding. Connect the dots. And the band is playing on while we go down…



I am no activist. I am politically naive. But I know the power of the internet. I know how marginalized we have been as patients. The people at the WPI are our friends. They are fighting for us, when no one has. As a community, we are often too sick to fight. So we have to let other’s slay the dragons for us. We have to support them in any way we can. Read: SEND AS MUCH MONEY TO THE WPI AS YOU CAN AFFORD. Please tell everyone you know. Pull out all the stops.



Sincerely,

Jamie Deckoff-Jones MD

Santa Fe, NM
 
C

Cloud

Guest
Oh, I forgot to mention this, and you probably already know sue. when I checked for side effects on Merck web site, Raltegravir was the only one with " no " side effects listed. Now I'm really excited!
Exactly why I'm watching Raltegrevir as well. xmrv is highly sensitive to it (in vitro), and it has low potential for toxicity. I saw one study where raltagrevir was used with the co-infected HIV/HCV patients with very low incidence of toxicity. If liver disease patients can tolerate the drug without toxicity, we should be able to tolerate it pretty well. l like hearing how others are tolerating and responding to this drug that seems promising in many ways.
 
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Hi ladybugmandy thanks for keeping us updated.

I had several periods of severe fatigue on the natural antivirals. Not sure if that is what you are feeling. I basically felt a very drowsy, drugged feeling and just slept and slept. It would always get better after 4-5 days though. This happened on olive leaf extract and on cimetidine (tagamet). (Tagamet is also an antiviral and immune modulator). I am not sure if you followed the tagamet thread but a bunch of us tried it around the same time and we were all hit with that lethargic feeling for several days. So I think it is possibly your lethargy symptoms COULD simply be a sign that the treatment is working. Like in the study on mononucleosis I posted in "Other health news", they found that the symptoms coincided not with infection but with the death of B cells. The infection was already on the downswing by the time the symptoms showed up, it was the infected immune cells dying off that seemed to cause the symptoms.

So, I personally would not take a break from AZT just yet. AZT and raltegravir are VERY synergistic according to Sigh's paper. So maybe it's no coincidence you starting feeling the lethargy once you combined them. So maybe like the mono study, your infected immune system cells are dying off and that is why you feel the severe lethargy. Sorry for rambling I hope this makes sense!
 

omerbasket

Senior Member
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I think, and this isn't a joke, that if you breath deeply and slowly (especially slowly when you get the air out), it might help reduce blood pressure and I think also heart rate. However, don't do it too much - because very fast you will get into hyperventilation, which is not good.
 

leaves

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Fast heartbeat could also be the response to toxins/ waste products from viral die off. If that is the case charcoal on an empty stomach with lots of water could help.
Do note that it will also absorb anything else, including medicines, so take it at least 3 hours from your meds.
xoxo
 
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hi ladybugmandy

Sorry about the rapid heart rate thing. What about a half dose of raltegravir? Since XMRV is 2.5 times as susceptable to RAL as HIV, a half dose might be adequate and might take care of the heart pounding. For tenofovir XMRV is only 1/4 as sensitive as HIV (this is all from Dr. Singh's paper). I don't think I'd bother with tenofovir, maybe keep it in mind as a very last resort though.

I got really bad chest pain for one night the day after I started Valtrex a couple weeks ago. It hasn't recurred thankfully.
 

Rrrr

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ladybug,

i have had that rapid heart rate before,too, and the pounding. i like leaves suggestion: if it is die-off or toxins, activated charcoal (found at all health food stores and is cheap) may absorb that. must be taken 2 hrs away from all other meds, from what i know.

i'm so sorry about this scary symptom. i hope it passes. we are routing for you!

xxoo
rrrr
 

gu3vara

Senior Member
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i have had viral die off before but this feels very different. just 2 days after i started RAL...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 RAL started to help. i had moments of less brain fog and less pounding/inflammation in my head on the drug.
It might just be that the die-off of xmrv is producing different symptoms than candida die-off or other viruses die-off. You are potentially adressing the root of the problem this time and it might feel different. Who knows....joy of being a guinea pig I guess ;)

Don't give up!
 
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i think a later paper found that higher concentrations of RAL was needed for XMRV than for HIV.
Well the later paper was comparing a breast cancer cell infected with XMRV to a PBMC infected with HIV so I don't think you can compare them. I am pretty sure the first study was comparing the same types of cells.

o this sucks so much. i was just starting to feel better after years of utter hell...and now i have to stop this drug!!! i could scream.

thanks for the charcoal suggestion. i have to do what this doc says but i will run it by him. he is already out on a limb prescribing me these drugs.

i will also suggest cardiac workup and ask if i can just get on heartrate control meds. lerner gave me low-dose atenolol and it got rid of the palps..but this isnt palps...its full fledged tachycardia. i cant lay down i feel so awful.
Sorry you are going through this. If you stop it maybe you can try it again down the road.

I've had heart pounding and adaptogens like seriphos and holy basil have helped in the past.
 

Rrrr

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sue, you mention atenolol. i have been on it for years (low dose: currently at 12.5 mg 2x/day). it has helped me with the pounding heart thing. but it sounds like yours is more intense now.
 
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Well the later paper was comparing a breast cancer cell infected with XMRV to a PBMC infected with HIV so I don't think you can compare them. I am pretty sure the first study was comparing the same types of cells.
/threadjack/

Could you please direct me to this breast cancer and XMRV study? TY!

/threadjack over/
 
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/threadjack/

Could you please direct me to this breast cancer and XMRV study? TY!

/threadjack over/
There wasn't a breast cancer XMRV study. The table in Dr. Singh's paper which shows the IC50 of several dozen drugs for XMRV and HIV in vitro used a breast cancer cell line to test XMRV with. They also used a prostate cancer cell line.