XMRV Who's positive

[imready]

According to the poll results there are three people negative and two who are positive. I've read the comments from the people who tested negative. But who are the two who are positive? If it's about privacy then make up a user name and tell us about your positive test results and how you feel about it.

 

[_Kim_]

First a comment about the polls: Because of the way the polls were set up, we cannot say how many people have tested positive. Right now, on the Culture test, there are three positive results and two negative. On the PCR test, there are two positive and three negative. We have no way of knowing if people ordered one or both tests.

And then, I would like to have some sensitivity shown to those who may have just learned that they are living with a retrovirus. They are dealing with a new reality. All these weeks, waiting and wondering could in no way prepare them for the reality of getting a positive test result. In time, those that want to share their experience will, but let them have a chance to figure out their own thoughts and emotions first.

 

[Eric Johnson from I&I]

Well, some would see it that way. I already assume that I very probably have it. Actually, I would be crushed if I didnt have it.

 

[LaurelB]

I'm one of the other positives

Hi, all.

I'm the second positive person on the PCR/DNA poll. The other person who is positive already posted their results and thoughts about it in a thread awhile back if you do a search.

I've been hesitant to post for various reasons, but primarily because I'm in a very severe 3 month long crash I haven't been able to dig out of. I have a lot ahead of me and need to be diligent about resting, and was worried because I can't keep up with posts or questions at the moment.

There were some privacy issues as well. My name and face are out there, and it feels funny posting such significant private health results in a public board that is googlable and can be tied to my blog and video. I don't have the energy to create a fake screen name though, and would feel funny doing so. So, my voting on the poll was my way of participating on the forum and still (for the time being) maintaining my privacy.

My other reason for waiting is that I only have partial results back (only the DNA PCR). I have not heard back yet on the culture test. I emailed them yesterday and it sounds like that part of the test is still not complete. I sent the blood in October.

Anyway, for those who do not know my story, I have severe ME/CFS and am bedbound and unable to speak more than a few words above a whisper. I've been ill 13 years and became ill after getting mono at age 24.

I also fit the "Incline Village cohort" in that I have severe RNase L dysregulation, low NK cells and activity, and active co-infections including HHV6. I also tested positive for Lyme by CDC criteria through Igenex (twice).

I haven't decided how I feel about this, but given the severity of my case and the lack of any treatment avenue ever really helping me, I am glad to know that this opens the door for more treatment opportunities in the future, and that it could potentially explain the severity of my case.

As noted, I'm not able to be online much these days, so may not be able to reply to q's... my apologies.

Also, I may decide to post this information to my blog at some point, but would appreciate respect of my privacy if I choose not to do so. Thanks kindly!


Best regards,
L

 

[Esther12]

Thank you for the information.

I hope that things can now start to improve for you.

Take care.

 

[imready]

LaurelB

Thank you for your post!! As you can see next to my user name I don't have a picture of myself. Your very brave to do this, I feel ashamed that I can hide and post my feelings without anyone knowing who I am. I feel like this disease has a stigma with it, and I don't want anyone to know or try to explain that I have CFS/ME. Only a few close friends and family members know what I go through.

Once again thank you for telling your story. I've been sick for 20 years, I also came down with mono and have never recovered.

 

[Kati]

Laurel

Laurel, thank you so much for sharing so much of you, especially at a time of crash where every ounce of energy is precious.

Your video presented to CFSAC was powerful and well done, congratulations. And I think that knowing you are XMRV+ is good news, in my opinion as it means there is treatments down the road for you/ us.

I personally believe we have to come out of the closet and show the world that this disease is real and hurtful. I don't think that I could have imagined before getting sick last year that some people could be homebound for 2 or 3 decades and being robbed of their lives. And I am a nurse. And I never thought it could happen to me.

I am also curious by the fact that you tested positive for Lyme as well- when you feel better, let us know if you are undergoing continuous treatments for that. I am also wondering if Lyme would be a trigger- or the cause- and perhaps ticks can carry XMRV???

No need to answer Laurel, but please know you are in my thoughts. Hang in there.

 

[Martlet]

Laurel

Thank you so much for posting. You are a very courageous young woman who reminds me that my problems are quite trivial in comparison. You will be in my prayers - everyone here is, but you will especially be so.

 

[Advocate]

Hi, all.

I'm the second positive person on the PCR/DNA poll...I have severe ME/CFS and am bedbound and unable to speak more than a few words above a whisper. I've been ill 13 years and became ill after getting mono at age 24.

I also fit the "Incline Village cohort" in that I have severe RNase L dysregulation, low NK cells and activity, and active co-infections including HHV6. I also tested positive for Lyme by CDC criteria through Igenex (twice).

Dear Laurel,

Since you are one of the most severely ill people, your positive XMRV offers hope that there will be a direct correlation between XMRV status and functional status--for everyone else, too. I'm sorry that you have this retrovirus, but I'm glad that you now have a reasonable, possible explanation for your long illness, your antibiotic-resistant Lyme and your other co-infections.

I am very grateful that you have posted this information. Networking and sharing information is one of our best weapons against the disease.

 

[LaurelB]

Thanks for all the kind comments and well wishes! I really appreciate it.

Kati -- I went through about 2 years of antibiotics and the Dr. Zhang protocol, and took mepron (for babesia) for a bit to try to treat the Lyme. I also had Vitamin C and glutathione IV's which made me worse. I was still positive after treatment, unfortunately.

I am curious to know if XMRV can be transmitted via ticks as well, and hope they look into this possiblity.

I agree that this positive result at least opens doors for future treatment. My fingers are crosssed.

 

[starryeyes]

Hi Laurel,
I always find your picture reassuring. You look like you're bedridden but not about to give up! I'm sorry you were postitive for XMRV too but hopefully there will be treatment for it soon. Thank you so much for all of you wonderful blogging and sharing about living with ME/CFS over the years.

tee