Monday, November 23, 2009

Heard Through the Grapevine: Test kit for XMRV to be available from Reno-based VIP Dx

From the  FMS Global News Desk of Jeanne Hambleton

Courtesy of ProHealth

Copyright © 2009 ProHealth, Inc.

 

 

Rumor on the ProHealth Message Boards has it that Viral Immune Pathology Diagnostics (VIP Dx) in Reno, Nevada (www.redlabsusa.com), will soon make available a test kit for the XMRV virus – the retrovirus which most of the world knows by now is thought to be a biomarker for a large proportion of chronic fatigue syndrome (ME/CFS) patients.

 

According to the buzz, ME/CFS patients and their physicians will be able to order VIP Dx kits as soon as pricing is established – and that was due to be Friday, Oct 16, according to a ProHealth ME/CFS Message Board user who has already arranged to receive a kit when they become available for shipment. According to her, “They send it to you by FedEx and you have to have a Dr. sign off and take it to a lab. [VIP Dx] pays for it to be sent back.”

 

This cannot  be offered in Europe. As of Oct 14, a Co-Cure listserv poster reported that Marguerite Ross, Director of Marketing & Client Relations at VIP Dx, indicated to him “we cannot offer the test in Europe because of the time difference and temperature changes the sample would experience,[which would render it]unsuitable for analysis.” In the same communication, she stated “the test will be available in the USA in about 3-4 weeks as it is undergoing final validation and licensing.”

 

According to the initial news on the VIP Dx test – posted Oct 9 on the CFS Warrior blog (http://cfswarrior.blogspot.com), there is “a PCR test for the XMRV virus itself. Another test kit recommended by Dr. Paul Cheney is the NKCP & LYEA test… If you want to be tested call the lab at 775-351-1890 and they will ship out a kit to you. Your doctor has to sign off, then take it to a local lab to get the test done and then it gets shipped overnight back to VIP Labs. It takes about two weeks to get the results. The woman I spoke to was very nice. They are swamped with calls but expected it.”

 

VIP Dx is the new name of the former REDLABS USA, launched years ago with the assistance of Belgium-based ME/CFS researcher Dr. Kenny De Meirleir, who has no financial interest in the venture. It was named after De Meirleir’s own R.E.D. Laboratories, a biotechnology company in Belgium focused on “developing clinical diagnostic tests and therapies for chronic immune diseases.” VIP Dx is located geographically near the Whittemore-Peterson Institute, which is part of the University of Nevada, Reno. VIP’s medical director – Dr. Vincent Lombardi, PhD – was recently hired from the UN-Reno School of Medicine, and reportedly played a role in the WPI testing.

 

Test Availability from Whittemore-Peterson?

 

Meanwhile, according to the XMRV FAQ at the WPI website, “The WPI has developed a blood test for the detection of XMRV. The test is currently undergoing clinical evaluation and validation. We hope to have a clinical test available to the public within the year.”

 

 

NEWS FROM  http://www.redlabsusa.com/  states:

 

VIP Dx - Viral Immune Pathology

News Icon LATEST NEWS: XMRV TESTING

Dr. Vincent Lombardi, the primary investigator and first author on a paper that appeared in the 8 October 2009 issue of “Science”, is the Director of Operations for the licensing and development of the XAND test assays used by VIP Dx for the detection of XMRV. To read this landmark publication, “Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome“, please go to (www.sciencemag.org). We are pleased to announce that VIP Dx has licensed this technology allowing us to offer the most accurate and sensitive testing available for XAND (XMRV associated neuro-immune disease).

VIP Dx 5625 Fox Avenue, Suite 369  Reno, NV 89506  Phone: (775) 351-1890  Fax: (775) 682-851 E-mail: info@vipdx.com 9:00 a.m. – 5:00 p.m. (PST)

Press Releases

October 23, 2009, Reno, Nevada

It is with great pleasure that Viral Immune Pathology Diagnostics (VIP Dx) announces the introduction of its family of diagnostic tests for the Xenotropic Murine Leukemia Virus-like Virus for XMRV associated neurological disease (XAND).

XMRV is a gamma retrovirus and replicates in dividing cells. Low-level latent infections are best detected in activated, dividing cells; to activate a latent virus takes additional cell culture. Productive infections are more easily detected without special treatment of the specimen.

Each XAND specimen must have an XAND acceptance code on the test requisition. The XAND acceptance code is assigned by our staff and will arrive on the test requisition in your specimen kit. Specimens sent without the appropriate acceptance code may result in the delay or inability to perform the diagnostic test. The diagnostic tests available for XAND* are as follows:

XAND by PCR for XMRV active infection: Test Code XAND ($400)

XAND1 by virus culture for XMRV latent infection: Test Code XND1 ($500)

XAND2 by PCR for XMRV active infection and virus culture for latent infection: Test Code XND2 ($650)

We are accepting XAND tests on Tuesdays and Fridays only due to the incubation period required for proper analysis. Therefore, you must have your blood drawn on Monday or Thursday and ship immediately back to us by priority overnight FedEx for receipt by us on Tuesday or Friday.

For XAND testing you must use the coded test requisition provided with your kit. Refer to the updated specimen guidelines in the right column of the test requisition for proper blood draw.

No special preparation is required for specimens; ship specimens at ambient (room) temperature. Specimens must be received within 24 hours for proper analysis. Collection and shipping instructions are included in each kit along with all required specimen tubes. The return clinical envelope and overnight airbill are also included.

To order you test kit, please e-mail your full name, address and telephone number toinfo@vipdx.com. There is a 4-6 week back order. VIP Dx is committed to having everyone tested who wants to be tested. Please accept our sincere apology for any delays. We thank you for your support and patience.

Please visit our website at www.vipdx.com for more information on VIP Dx and our tests.

Please visit Whittemore Peterson Institute for FAQ on the XMRV virus at www.wpinstitute.org.  On behalf of the VIP Dx team, we thank you for your continued support.

* The XAND tests were developed and their performance characteristics were determined and validated by VIP Dx. These tests have not been approved by the U.S. Food and Drug Administration (FDA) for diagnostic purposes. Medical expertise is required for XAND test interpretation.

 

….ends…..

 

 

[Via http://jeannehambleton77.wordpress.com]

Friday, November 20, 2009

MRI

Headed in for an MRI of my spine this afternoon. The pain specialist I saw a few weeks ago ordered it to see if the fibromyalgia is really just nerve damage due to spine changes from Marfan. Don’t get me started on the grief it took to get this scheduled, but for once it wasn’t the insurance company’s fault! Go figure!

Anyway, I just got off the phone with the scheduler and she said it will be sometime in JANUARY before I can get my next appointment, to even DISCUSS medication or physical therapy/acupuncture (which I’d prefer). My initial appointment was 4 weeks ago.

So…the pain clinic only lets you see them for 6 months, but the first HALF of that is spent waiting, which means I get maybe two visits after starting treatment to see the specialist. Seriously?!

I think I’m going to go cry in a hot shower now, then try to think up a Plan B.

Ouchies

My days and nights are all mixed up. I went to bed about 6 this morning and woke up at noon because someone was at my door. Then soon after, my health aide came to help. Not long after she left, the mechanic drove my van here and I drove him back to his shop. Next…to the food shelf. Two guys from my church were there and they followed me home and brought my food in for me!

Mary Lou found me outside, then Beth and Luc came to visit. It was dark out by the time I got to sit down at the computer and try to catch up with things.

This is a new one….not only are my knees swollen, but the side bumps from the inside of my knees swelled up bigger than I have ever seen them. When I walk, they bump together. Owies! Creepy skin and arthritis pain together My neck does not hold up right and the hump on my back is extra swollen and sore. My neck lymphs are swollen, my tongue is swollen. My shoulders are AWFUL!

I have a couple of lab slips for blood tests. The doc is doing CRP and SED rate since I asked him to. He misunderstood WHY I wanted them and wrote it was for myasthenia gravis. It’s for MCTD….mixed connective tissue disease. I think he forgot I have that. My guess is the results will be wicked high. Ouch. IVIg….I long for your healing swirl of plasma!

Wednesday, November 18, 2009

wanda would cane smack your ass for this...

Here we are, less than a week away from Thanksgiving…and what do I have to be thankful for???

I guess the answers are: my mom, Pedro and my fuzzy family of 5 (3 cats, 2 small dogs.)

What about the rest of my family?? Like my “father” Michael Sawczuk and “uncle” Dan Sawczuk…they hate me because of some unknown reason. I guess my “dad” hates that I was depressed all the time…so he decided it was in his best interest to do away with me making me more depressed than ever. Then he must of told the rest of the family some sort of exaggerated stoner version of the actual truth.

You don’t love me anymore. You hated to be around me. You & Sue Tessler thought it was was a good idea to call the cops on your daughter on Christmas 5 years ago, because I wouldn’t leave until you told me you would be my dad again. You felt all that was something appropriate to tell and do to your daughter who has battled an auto-immune system disorder and mental illness ever since I was 12?? What kind of sick, evil fuck are you??? I bet it takes at least 4 Old Styles now to numb that kind of guilt.

MICHAEL SAWCZUK, I WAS SICK…I AM SICK…I NEEDED YOU…I NEED YOU…AND WHERE THE FUCK ARE YOU???

So now I’m sicker. The luck I have. I’m seeing an Otolaryngologist/ Oncologist now. I’m more scared than I’ve been in a long time. Biopsy is scheduled for early next week. I hope it’s not…as Grandma used to say, “the big C.” But it’s something. It’s at least 5 somethings, in my neck that are not supposed to be there. I’ve been so tired, and so sick…but assumed it was my Fibromyalgia. I myself am blown away that I have to deal with more doctors, hospitals, tests, needles, machines, appointments, medications….it’s so overwhelming, that I have moments where I almost hope life is finally done with me.

So, I will have another test this week, and one next week…and there will be nobody to call and wish me good luck, or ask me how things went. I’m not worth it. I wish I knew why.

I’m very, very scared and feel so all alone!!! I thought family was supposed to love you the most during these hard times. Not mine.

It’s just me and my wonderful, amazing mom. And I can’t even begin to explain how much it breaks my heart that she has to deal with my sick, sad ass all on her own. It’s not fair to her or us. None of this is fair!!

:::I’m soooooooooooooooooooooooooooooooooooo SAD, HURT & ANGRY!!!:::

Friday, November 13, 2009

BRING ON THE SELF-PITY

Self Pity

I never saw a wild thing

sorry for itself.

A small bird will drop frozen dead from a bough

without ever having felt sorry for itself.

D. H. Lawrence

In the movie G.I. Jane, the Master Chief Officer shouted D. H. Lawrence’s poem to the trainees while they were performing various grueling exercises.  This same Officer ends up giving G.I. Jane a copy of this poem with a medal of honor since she saved his life.  Initially, I agreed with this kind of commendation.  In fact, as I sat there discouraged by another setback, I thought how I needed to be mentally stronger and that there can be no place for self-pity.    I even reflected on my good fortune that during this long drawn out illness  my optimistic personality has protected me from falling into a lot of self-pity. And yet, I found myself   wondering if there were actually some benefits to self-pity.

There are many strong condemning quotes such as the one from Helen Keller: “Self-pity is our worst enemy and if we yield to it, we can never do anything wise in this world.” And it seems that the famous writer D.H. Lawrence wants his readers to aspire to be more like this small bird who never ”felt sorry for itself”.  Consider this picture:  There is a small bird who is slowly freezing to death, who takes no action to protect itself, who is living fully in that moment and not considering tomorrow, and who finally falls off the bough of the tree to its death.  Is that a picture of how you want to be? Do you want to be like this bird that not only had no self pity but no emotions whatsoever?  Do you want to live in the moment so completely that you don’t consider whether there is something proactive you could do to change your circumstance?  Do you want to lose your mortality and never question whether you have any regrets, whether you have anything to be sorry about?  This bird did not pity itself because it had no aspirations to be anything more than what he was.

If someone surrenders to self-pity, it is because that person is aware that her life is being diminished by some circumstance or by some personality flaw.  Experiencing  self-pity suggests she knows she has so much potential that is not being realized and she wants so much more in her life.  Certainly self-pity can be dangerous just as Elizabeth Eliot claims: “Self pity is  . . a sinkhole from which no rescuing hand can drag you because you have chosen to sink.” On the other hand, how often have you heard people say that “they got so low there was no where else to go but up?”  Often, during an intense self-pitying phase, that person may look up and say, “Enough.”  It is at that moment when the pain of staying the same is greater than making a change – that’s when  the negative hold of self-pity is broken and something positive from those deep human emotions emerge. What we often miss here is that sinking into a deep self-pitying hold may be the necessary impetus for effective change.   It is in that hole that we have the possibility of becoming a noble creature that the frozen bird could never become by creating something meaningful and significant out of our circumstances.   D. H. Lawrence suffered most of his life and finally died in his early 40’s.  He must have experienced first hand the highs and lows that accompany chronic illness.  Perhaps, he wasn’t edifying that frozen bird, nor suggesting that humans should become more like that frozen bird.  Rather, he may have been revealing the complexities of self-pity especially the  redeeming aspects of our human nature that we would have to give up in order to live the life of a bird.  And perhaps the title is more ironic since the bird is to be pitied since it can’t experience even the “worst” of emotions:  self – pity!!

Wednesday, November 11, 2009

DON'T PANIC DURING A SETBACK

“He’s exhausted. His muscles ache beyond belief and his body is chilled to the bone. His heart is pumping a mile a minute after having just maneuvered through an obstacle course that would challenge the most agile men. He knew it wouldn’t be easy, having read articles about “the quiet professionals,” and listened to stories about “the toughest military training in the world” from guys who had gone through the training before him. He tells himself he can make it, over and over again. This Sailor wants to be a U.S. Navy SEAL.”

I am slightly embarrassed to admit that Greg and I watched G.I. Jane last night.  I am even more embarrassed to confess my anger and resentment as I watched Demi Moore show off her physical prowess with one armed push ups and sit ups with her feet hanging from a bar so that her body could be completely suspended.  I had barely recovered from the weekend’s faux pas of going into Save-On Foods with Greg and then Tuesday I started the treatment to pull out more mercury.  The accompanying pain and debilitating fatigue that just settled in during the afternoon was overwhelming and disappointing.

Then gradually as I watched this movie, I realized I was observing some nuggets of wisdom for my plight!  As her character was going through a grueling training process to become a Navy Seal, Demi Moore was blindfolded and water was continually poured over her face and into her mouth to mimic the sensation of drowning.  The trainer told her that panic was what usually debilitated soldiers during this kind of torture.  The idea was that she was to learn how not to panic during such circumstances.

I understood what he was talking about.  There are times when I am bombarded with symptoms and yet my mental and emotional resolve are strong enough to neuturalize any sense of panic that I may not reach my goal of health.  Other times -like yesterday,  I sink deeply into the abyss of discouragement and just want to surrender to the illness so that I don’t have to be continually disappointed by setbacks.  However, yesterday as I   wrote words of panic that I may never become well, I concluded with these words:

“And yet, oddly, through the tears and the grief, there is still a smoldering hope that says, “Don’t give up.”  I serve the God of the impossible and for all I know tomorrow may be the beginning of a breakthrough.  Tomorrow more mercury may be pulled from my body – enough to improve some of my symptoms.  Enough to raise debilitating fatigue, enough to clear the mental fog, enough to enable me to have increased endurance after 1 p.m.   Enough to hang onto my doctor’s words that , “It may take up to two years, but I believe I can help you.”  Enough to believe that I was lead to this doctor by the God I serve and enough to believe that He knows what is best for me. “

“You have to want the program. And mentally, never give yourself the option to quit,” said Master Chief Information Systems Technician Dennis Wilbanks, head SEAL recruiter.  Like the successful SEALS trainee, I am no quitter!  I will endure another setback with strong mental resolve and then plan my next training session to become healthy.

Early riser

I never got to sleep last night until about 6am as the day before I was sleeping from 11pm to 7pm the next day, my body feels like ive just been ran over by a car and this morning I was walking as if I shit myself lol.. So the cowboy look isnt so good when I had to drop my boy off at school…

This is the first time I have managed to get up in the last 4 weeks to take my son to school, and I am beginning to think is the amitripline working or is it the new super strength vitamins I got yesterday from Holland and Barret..

  • B-100, vitamin B complex (1 a day)
  • Mega Vitamin, high strength vita mins

They are both massive tablets and only look acceptable for a horse to eat not me..

On a more personal note, I sat and thought about one of my friends who died in Northern Ireland during my time as a soldier serving in Northern Ireland, Lest we forget..

Monday, November 2, 2009

i did it... and i'm gonna celebrate it!!

YAY!! I did it!!

Okay… all I’m sayin’ is… I DID IT! I was in some serious pain and I really believed I was not going to be able to go out with the kids trick-or-treating… but I ate some food, put my shoes on and I walked out the door.

So let me backtrack a bit. I went to my daughter’s soccer game in the afternoon and thought I was going to have to go to bed on the way home from that. I was almost in tears on the way home, my body hurt so bad. I just took some deep breaths and when I got home, I sat down and relaxed for about 20 minutes before folks started coming to the house.

As family and friends came over and we started to get the food out and the kids started to get ready, I started to get excited and at the same time really nervous… “would my body fail me… would I just go for it and pay later...”

My sister-in-law drove over the hill from Santa Cruz, bringing with her my 11-year-old niece and 3-year-old nephew… God bless her for that!

As we all stepped out the door to go trick-or-treating, the thoughts going through my mind… “please don’t make me have to call my husband to pick me up… body, please don’t fail me now… just let me have fun on this Halloween night!“

My nephew kept me laughing for the next hour and a half as we walked the neighborhood. He was sooooo excited, his excitement and happiness from the night just overflowed and had me smiling and laughing!! He ran from house to house to house and told us every piece of candy he got from each house. He was first at the door in front of the big kids. He said “Trick-or-Treat”, “Thank You! Happy Halloween!” at every single house without being told. He knew to only go to the houses with the lights on, he told us which houses to go to… he carried that bag of candy by himself and did not complain ONE TIME! Man! I was in awe of this child… how can we bottle up that joy? At the end his bag of candy had to weigh at least 1/2 his body weight! He carried it like Santa carries his bag of toys, slung over his shoulder…

So… yes… I am celebrating the fact that I walked the neighborhood and didn’t have to be picked up!

Mostly, I am celebrating the fact that I have this little angel to be thankful for, that made me so happy and allowed me to enjoy Halloween for another year.

Stay cool and thanks for reading!