I tested negative to both tests

[alice1]

Sue I'm so glad you posted!!!! I hope someone knows about Naltrexone.

 

[hensue]

Sue there is a Dr Bahiri in New York who prescibes LDN but you have to get in compounded at a reputable pharmacist. I know there is one called Skip's in Florida. He was going to prescribe the ldn to me over the phone. The doc told me it worked better for fibromyalgia than CFS. Well I took that with a grain of salt. I think he meant it help the pain more and not so much your energy level.
I know it is on the pro health board. You know about the yahoo group for ldn and cfs?

hensue

 

[kim500]

ladybug, so glad to see you back here.

whew.

glad you have a doctor supervising with the meds. take care.

 

[Kati]

hi andrew and koan, thank you

this is what VIP told me when i emailed them about the 36% number:



"When Whittemore Peterson did their research it was on a small group of patients who have a confirmed diagnosis of CFS.

VIP Dx is testing hundreds of patients whose medical history is unknown and a diagnosis of CFS may or may not be confirmed.

Although we strive to offer the most sensitive test available XMRV is typically present at a very low-copy number and may be below the limit of detection from time to time.

Retroviruses (like XMRV) are integrated into cellular DNA and are considered life-long infections; it is possible that the immune system may decrease the virus to a level below the limit of detection from time to time (non-symptomatic). Presently, the life cycle of the virus is unknown; if you receive a positive result at any point, we do not recommend re-testing.

XMRV testing at VIP Dx uses the same methods as published in the Lombardi, et al, October 2009 issue of Science. This test included PCR testing on lymphocytes as well as virus culture. This method requires 20mL of whole blood and although it is much more time consuming and labor intensive than other methods, we find that it dramatically reduces the rate of false negative results. It is also why the cost of this test is greater than that of tour standard PCR tests."



by "confirmed diagnosis", i take it they mean people with abnormal RNase L ratio's...?

i am sure they got a bunch of blood from autism and MS patients, too. that may account for the low percentage.



sue

Ladybug, thank you for that piece of info from VIP. I am thinking of you, and like Koan mentioned, we are all in the same boat.

I know that testing negative is disconcerting and that you have a lot of pain. Know that tomorrow is a new day with new possibility. The Phoenix group is very ressourceful, and to my eye is getting powerful at advocating for all of us. WPI is working to develop better tests and treatments.

Big hug to you.

Kati

 

[kat0465]

i take oral interferon, and its about 30.00 a month fr a bag of it.its sublingual. so just wondering if this is the same thing katie is talking about.
i wrote you o n the prohealth page too Ladybugmandy, Please Read it, it may give you some other options besides the azt.Katie is right, thats a Powerful Drug, just Please try some other things first, and wait for the Better xmrv Test!!

ANd have you thought about LDN??? its cheap and cant hurt you, it 's worth a try!!
Kat

 

[oerganix]

LDN

Hugs to you, ladybug sue.

There is a LDN thread here on the forums: http://forums.aboutmecfs.org/showthread.php?379-Low-dose-Naltrexone&highlight=Naltrexone

An encouraging blog: http://livewithcfs.blogspot.com/2008/04/low-dose-naltrexone-treatment-for-cfs.html

A page w/help for starting LDN: http://www.webspawner.com/users/howtoobtainldn/index.html

The original site: www.ldn.org

I have been researching LDN for over a month and have found nothing to indicate it has ANY withdrawal symptoms. If you check out the posts on the LDN forum here, people change their dose up or down, or take a break, at will.

I myself plan to try it very soon. I have ordered it from India to the US and an acquaintance will bring it down to me here in Nicaragua in about 10 days. I got the 50mg capsules and will do my own "compounding" at low doses. For $113 you get enough to last you 333 days! They have a toll free number or you can order online.

I also downloaded the info for EFT just today and have tried one session. There are youtube videos about it, too.

Some of us have had great pain relief on antibiotic protocols such as the Marshall Protocol or Road Back. I rid myself of horrible back pain on the MP and eliminated MCS.

I, too, would encourage you not to do the AZT, but it really is your decision and I hope you keep us posted whatever you decide.

((((U))))

 

[froufox]

Hi ladybugmandy,

I'm sorry you're feeling so desperate. I think LDN is definitely worth looking into and I would consider the other suggestions too. I dont want this to sound like I am encouraging you to take AZT at all, like others I have a lot of reservations about it for CFS and personally wouldnt consider taking it myself but I just wanted to share some info in case it is helpful - there is a study that showed that l-carnitine helped to significantly protect HIV patients from oxidative stress and cell death whilst being treated with AZT and another HIV drug. Unfortunately they dont say what dose they were on. Heres the link to the study..

http://www.ncbi.nlm.nih.gov/pubmed/12215207?dopt=Citation

So if you do decide to take the AZT perhaps it would be worth taking l-carnitine or acetyl-l-carnitine alongside it but obviously discuss this with your doctor. I personally take acetyl-l-carnitine for depression aswell as for mitochondrial energy and find it quite helpful, it works the same as l-carnitine and you can take either tho the ALC is more expensive but you dont need to take as much as l-carnitine as it is more potent.

I hope that helps anyway I just wanted to share in order to protect you if you do decide to take the AZT.

Take care and I hope you start to feel better very soon. :Retro smile:

 

[DysautonomiaXMRV]

Re: AZT for a patient suffering from any physical disease of immune origin.

It's probably illlegal to give a patient AZT without evidence of retroviral infection, even in the United States where money changing hands can get you anything from 'teen' cosmetic surgery for Cheerleading to life saving cutting edge stem cell treatment for Cancer.

The medication cited would need to be monitored by a doctor for signs of causing organ damage (side effect of AZT).

To my knowledge, unless one obtains AZT clandestinely off the Internet from China or other countries that do not restrict medication sales to foreign countries - then any doctor/medical professional involved in supplying AZT to a non HIV/XMRV infected patient would risk losing their license to practice, or worse. Having said that, there are always ways around getting medications. e.g. Brittany Murphy (family members got drugs for her) , Michael Jackson (Doctor prescribes innapropriate drugs) etc.

As it stands, to take AZT for XMRV would require evidence AZT is safe to take, never mind if it's effective. I appreciate people's desire to take AZT who are very sick, and their haste to try 'anything' to help. However it would be illogical to take a medication for an XMRV test that is not positive, and for an XMRV test that is not yet finalised or complete, and for a virus and a patients condition (any condition) that may evoke serious potentially fatal side effects.

It's similar to saying I think I'm diabetic, then not having a positive glucose tolerance test (that's in it's infancy), and then saying I'll go ahead and inject insulin anyway as it might help. The only way one would get access to AZT in a controlled and sensible manner would be to take part in a drug trial for XMRV and be a voluntary guinea pig. There will be, and probably are patients already on AZT with a positive XMRV test from VIP dx, however, these patients are taking a big risk. If severe CFS patients suffer to the levels they do (at rest), the potential toxic overload of body systems in severe CFS patients could be fatal. No one knows, as it's never been trialled.

I am sorry for the lady who wrote this post and feels so awful. We just have to all hope that as we spot the summit and get tripped up into the deep snow, that a warm helping hand will lift us out of the abyss and guide as to the the correct spot to the plant the flag of relief. Lets see in the next few weeks what Dr Mikovitz has to say in her video talk. I am sure there will be some positive news. Try and hold on a little longer.

 

[lebowski]

hi ladymandy ,
i say dont try it unless u r in an hospital being effectively monitored for anything that may go wrong .. or maybe not even in an hospital with a negative test and an already weak health condition ..
yes u might have an undiagnosed xmrv but no one knows yet if this virus is the thing causing the disease , it might be a very benign virus too ..
and many healthier people will try azt anyway without being seriously harmed , just wait and see if they benefit from the trial ..
use the psychoactives and immune-boosters and wait a little bit more for the rightest move .. it s not courage but intelligence that wins the wars .. this is not like tring b12 or vit c ..

 

[kat0465]

Sue,
have you got any info on how much azt is going to run you?? I am worried about you, i know your desperate. But please just maybe try some other less hash meds first. i know you think you can't be any sicker, but im hear to say yes you can!
i made myself terribly sicker than i was by overdoing supplements, i almost killed my kidneys!!
and am still having problems from just jumping in and taking a ton of stuff trying to feel better.
Just saying be careful, some things do more harm in the long run, although i know its hard to Imagine that.Im not saying LDN, iv's and some other things i have posted about are a cure all by any means, but if they can make you feel better without side effects( or very little)try them first.
you never know what might help.i know $$ is a big issue, epecially if Insurance wont pay for something.i have been in that boat many times! and i dont know if your seeing a good understanding Dr.
But if theres anything i can do for you Please let me know!!

I see you on the prohealth site all the time & although i dont post much on there, i really worry about you the most, Pray that you will get some kind of improvement.

Kat

 

[Sushi]

Hi Sue,

I don't have answers either, but I am one of those who has been on LDN for a fairly long time--over 5 months--and it has helped me a lot. There are no known negative effects from stopping taking it (i.e. no withdrawal symptoms.) I am in touch with others who have taken it for months and one person I know has had really, really noticeable changes--going from house bound to able to drive, go out occasionally (for fun!) and has a lot of improvement in neurological symptoms and stamina.

Not everyone has such good response to it, but...it is cheap, seems to be extremely safe, and might be worth a try.

Best,
Sushi

 

[Cort]

I've heard good things about low dose naltrexone as well.

 

[Katie]

i have a couple of questions about naltrexone....was wondering if someone out there might know.

my NYC doctor said he could mail it to me from NYC (he deals with a compounding pharmacy there). i decided that since i am so ill and the compounding pharmacies here are so far, i will let him send it to me...can it be sent by mail or would the temperature changes harm the drug?

is it taken orally?

the doc said he wouldnt prescribe AZT to me. i am surprised. now i have no way of getting an antiretroviral unless i test positive to XMRV (in which case a local doc has agreed to help). the NYC doc said he has no experience with the drug and it is toxic.

i emailed klimas, who said that azt "is not her favorite drug" and that i should be patient.

i feel like i have an alien in my head and neck trying to get out. i think IV cidofivir would help - i know it would - but i cannot afford it. i suspect HHV6 is a big factor for me.

i will have to make do with naltrexone until the antibody test is available. i have to eventually show exposure to XMRV or i am toast.

One your last sentence, don't forget the gene expression stuff, Dr Kerr might not be hitting the headlines but I've been watching his work grow over years, his subgroups are holding up and he's filed for a patent on a test ages ago. You might not have a retrovirus, but you might have at least 88 messed up genes. There's still hope. In fact I'm holding out more for the genetic stuff than XMRV, just one culprit is too neat for such a messed up disease, no matter the activated viruses, there's got to be more going on and since the genome project there's acres of science to uncover. No toast yet, ok?

 

[Dr. Yes]

Hi Sue...

Actually, we wouldn't have to wait for some massive, futuristic gene therapy... The Kerr studies show that gene expression is different in 88 genes in ME/CFS patients; the reason it's different very likely is NOT due to defects in the genes themselves, but to external factors causing abnormal patterns of gene expression. A treatment could potentially be devised from something as simple as identifying the function of one of these proteins and its effects on body physiology and giving an appropriate agent to limit its impact. (A very simple example is the use of antihistamines to block the action of histamine 'downstream', without even addressing it at the genetic level.)

None of us are toast! We will remain squishy, spongy and soft!

 

[cfs since 1998]

i have a couple of questions about naltrexone....was wondering if someone out there might know.

my NYC doctor said he could mail it to me from NYC (he deals with a compounding pharmacy there). i decided that since i am so ill and the compounding pharmacies here are so far, i will let him send it to me...can it be sent by mail or would the temperature changes harm the drug?

If it is in dry form (e.g. not a liquid suspension) it should be fine. I just got some naltrexone from Spain so...

is it taken orally?

Yes.

i feel like i have an alien in my head and neck trying to get out. i think IV cidofivir would help - i know it would - but i cannot afford it. i suspect HHV6 is a big factor for me.

The patent expires June 26 -- six months. It will probably still be expensive due to administration costs but maybe you will be able to afford it when a generic comes out.

i will have to make do with naltrexone until the antibody test is available. i have to eventually show exposure to XMRV or i am toast.

I second the naltrexone recommendations. I hope it helps you but like anything else it can take a few months. Have you thought about Isoprinosine (Imunovir)? I was making my own substiute version for a few weeks but I decided to order it from goldpharma.com instead because their prices are really good.

 

[flybro]

Kati

but you might have at least 88 messed up genes. There's still hope. In fact I'm holding out more for the genetic stuff than XMRV

how about XMRV being the phenomna that changes the genes.

then perhaps the damge is doen and it moves on, would exposure to xmrv in the womb show up as an adult?

 

[Kati]

Careful with the spelling of the names, we have a KAtie and I am Kati and we are 2 different people!!! I don't think I participated in this thread as of yet.

 

[Katie]

Kati



how about XMRV being the phenomna that changes the genes.

then perhaps the damge is doen and it moves on, would exposure to xmrv in the womb show up as an adult?

Entirely possible, but many viral triggers effect the genes. For example, viruses can trigger diabetes, in the case of a young family member he still had the triggering infection when he was diagnosed (water infection). I think the doctor said this was the switch that packed up his pancreas. As Dr Kerr's study subgroups people by onset, i.e glandular fever, Q-fever etc. then these could be adequate triggers for the necessary gene expression changes separate from any interference by XMRV. What do you think to that explanation?

Good luck LBM in whatever you do.

Katie

 

[Marco]

Hi LadybugMandy.

You sound pretty much at the end of your tether and I deeply sympathise that you are feeling this way.

I'm afraid we all invest too much time, energy and hope in finding the cure - totally understandable.

But I'm afraid I agree that I wouldn't try any potentially damaging treatments on the assumption that the problem is viral. It may well be but I think our bodies have enough toxins to deal with as it is without any additional overload. I also think you can drive yourself to distraction looking for and trying every conceivable remedy recommended. Lets face it - if any of these were a cure - we would all be on them. If possible, try to take a little time to see how things pan out over the next few months - study results should be coming thick and fast.

In the meantime I'm going to recommend a boring old book if you haven't already read it- Full Catastrophe Living by DrJon Kabat-Zinn. - How to cope with stress, pain and illness using mindfulness meditation.

Dr Kabat-Zinn runs a clinic for people suffering from all types of chronic illness and pain - and no assumption at all that these illnesses are not real. The basic premise being that while we can all hope to be better/pain free in the future - we are where we are in the present and can use simple tools to minimise our suffering. No need to get all philosophical unless that's what interests you.

I know if I was at 'end stage' I'd much prefer to able to face that with calm acceptance rather than fear and anger.

Take care of yourself;

Mark

 

[Sunday]

I'm not sure if this is the place to put this, but you might want to check out Freddd's story. He was in a wheelchair, actually mostly in bed, and very out of it for a long time (he also has other health problems which contributed). He devised a protocol using active B12s which I am trying. You can find it on the Hidden Story thread. It's a long thread, but if you can read the first three pages, you will be getting the basics of the protocol in condensed form.

I won't lie; it's not an easy protocol, because it basically makes your symptoms worse for awhile and your neurology goes haywire. It's not a quick fix, either. But I and others have had noticeable improvements on it. As Freddd says, when he started with this he was a zombie, so it didn't really matter if he turned into another kind of zombie for a few days or weeks or months.