I Just Had Blood Drawn For the Montoya Study

[Dreambirdie]

I went to Palo Alto on Friday to have my TEN VIALS of BLOOD drawn for Montoya's research study, which is officially titled: Gene Expresion and Immue System Dynamics of Infection In Acute and Chronic Diseases.

I was getting over a stomach bug (nausea, diarrhea and dehydration) last week, and was not thrilled about having so much blood drawn at such a bad time. But with this illness, is there EVER REALLY a good time? So I did my best to hydrate as well as I could prior to the blood draw*, and off I went.

As it turned out... everything went very smoothly with both the ride (in the car over the hill on the roller coaster of Highway 17) and the blood draw. The lab of the research facility up at Stanford was not very toxic, in terms of triggering MCS issues for me. Jane, the research coordinator, was VERY accommodating and nice. She is the research coordinator and the lab tech. She drew my blood herself, and did not hurt me at all in the process. I usually sing HERE COMES THE SUN during my blood draws, and she actually sang with me. We also sang another Beatles song as well (I WILL), as it took 2 songs and a repeat verse to fill all 10 vials with my blood.

I am relieved that the blood draw is over with, and recovering from the trip and the relapse back into stomach-bug-land. I hope that the research provides all of us who are participants in it with some useful information... in the 6 to 12 months that it will take us to know. I wish it was sooner than that, but time is going to pass either way. In a year from now, I will know exactly how many pathogens I have been hosting.

* I just want to add that Starry Eyes recommendation to drink coconut water for hydration prior to the blood draw was a great piece of advice. Thank you Starry! It was really helpful.

 

[kurt]

You are a trooper!

Do you know which genes are being tested?

 

[glenp]

Wow dreambirdie - 10 vials!! Do you keep in touch with them now, or nothing for 6-12 months??

glen

 

[Dreambirdie]

Here is all I know about the study.

Dr. Montoya (at Stanford) is doing this study, Gene Expresion and Immue System Dynamics of Infection In Acute and Chronic Diseases.
Anyone can volunteer for this study if they have chronic fatigue (more than 6 months) and have not taken antivirals/antibiotics within one month of the blood test.

Everyone who volunteers gets free blood tests and results.

The testing is extensive and includes tests for 60 different pathogens.
They are still in the process of finalizing the list of tests but so far they have included these:
XMRV,
EBV,
HHV6,
HHV1,
HHV2,
CMV (HHV5),
several strains of Lyme Disease,
Chlamyedia Pneumonia,
Babesiosis (several strains),
Bartonella (several strains),
Ehrlichiosis,
Rickettsia,
Mycoplasma,
Enovirus,
and others.

This is a very large study, and it will be going on for at least four more months.

When you call, Jane (the study coordinator), will ask you a few questions to see if you're qualified for the study. (Sorry but I won't post the # publicly, as she has been swamped with hundreds of calls.) And then she will schedule you a time to come in for the blood draw, which takes place at Stanford.

The study is being done in the California (Bay Area).
At this point, THEY ARE NOT ACCEPTING PEOPLE OUTSIDE OF CA.
It will take 6 to 12 months to get the test results.

That's all I know.

 

[Doogle]

I gave my blood Friday. They told me that you have to come to them in Palo Alto CA to give blood, they won't come to you. No Genes only pathogens are being tested as far as I know.

 

[silicon]

I had my blood drawn a couple of weeks ago. Jane was very nice, both over the phone and in person. I don’t expect to hear from them until the results are complete. I’m looking forward to a comprehensive pathogen profile, as I don’t believe I’ve been tested for any of these pathogens in the past. I hope that afterwards, I’ll have more of a method to my treatment plan.

 

[Dreambirdie]

Thanks to everyone who's been tested for coming forth. It will be interesting to see which pathogens they find in all of us.

 

[SaraM]

I had the blood drawn last week. The results will be available within 6-12 months. It seems some of you knew about this study before it was posted on this forum. I wonder how. It would be nice if you write a post about the future studies in our area enabling others to volunteer.Thanks.

 

[silicon]

I actually heard about the study on this forum on June 3rd, and called up the following day to have my blood drawn. However, the next day, curiously, the thread that mentioned the study had been erased! I had also heard that the advertising for such studies was supposed to be carefully controlled, and I assumed that is why the PR thread was erased, but did not inquire further about that, although I did think it was weird. Apparently the study was announced on the ProHealth site, which is, I assume, how most people found out about it:

 

[Timaca]

Silicon and SaraM~ The previous thread was pulled about the Stanford study, for Stanford had not authorized any kind of announcement or solicitation about the study. And posting info about the study, including the phone number of who to call to participate had not been authorized. So, the thread was pulled. There was some question as to whether or not this thread was ok to be posted, and after consulting with the appropriate people it has been determined that is is "ok" for now. It really is important to not post info about studies unless you have been given the OK to post and you know what to post and what not to post. Otherwise, it can cause problems for the research team.

If someone can get ProHealth to delete that posting about the study, it would be appreciated. Again, that kind of solicitation has not been authorized by the Stanford research team. Or Silicon, at least delete it from your post please.

We all get excited when we hear about studies and doctors that are doing research that might benefit patients, but to post info that has not been OK'd often causes more problems than good.

Best, Timaca

 

[SaraM]

Silicon, thanks for the link. Anyway, I am happy Stanford is running this study and I could be a part of it.

 

[silicon]

Timaca,

I checked with a moderator regarding the ProHealth link, and was advised that the link was ok.

silicon

 

[Timaca]

It is the wishes of the Stanford CFS research team that phone numbers are not to be put on patient forums for recruitment purposes. If you know of forums where this is occurring, please notify the administrator of the forum so appropriate action can be taken.

Thanks for helping them out by honoring their request. If you have questions, you can PM me.

Best, Timaca

 

[Timaca]

My guess is that Dr. Montoya chose the pathogens he thought might be involved in Infection Associated CFS based on what he's seen in his patients and after consulting with other physicians. Dr. M has been in contact with various clinicians and researchers who study and specialize in various pathogens (such as Lyme, Cpn, EBV and enteroviruses). He himself has done research in HHV-6, and is an expert in Toxoplasmosis as well as infections that result from heart/lung transplants. For further info on his published papers see: http://med.stanford.edu/profiles/id/frdActionServlet?choiceId=showFacPublications&fid=4047&

I can't answer your more specific questions about Lyme disease. Obviously this is a huge study, and has the potential to help us a lot. I'm grateful that Dr. M is taking this on. He is one amazing doctor and researcher.

My understanding is that the study was privately funded. If anyone is interested in donating toward CFS research at Stanford, you can PM me for further info.

Best, Timaca

 

[Francelle]

Just to put your mind at rest - as far as I know each standard vial of blood is only 10mls, so 10 x 10 mls only equals 100 mls, which is a pittance of our total blood volume - lol!

 

[Julia Rachel]

I agree with Timaca. This was an error in Judgement by whomever decided to post a private email that was sent strictly to Montoya's Patients. However, Word of Mouth has gotten us pretty far and I am sure the Study Underway was quite aware of the outcome and what some patients might do with the information. The news is out, so I feel comfortable talking about it.
http://vlgonvalcyte.wordpress.com/

 

[deemkooo]

Is giving blood closed?

Is giving blood closed? I've had fibro over 10 years' I can't take this exhaustion anymore. Thanks.

 

[Timaca]

Hi deemkooo~ I believe that they are still taking study participants (sick people as well as controls). My understanding is that you have to live in CA and be able to get yourself to Stanford for a blood draw. There are other criteria as well, but those are the first ones to consider.

Best, Timaca

 

[deemkooo]

Thanks. I'll try to get in.

 

[salome]

also had the 10 vials of blood drawn for Dr. Montoya study

that's a lot of blood!

i went down the next day for a week. got very weak and couldn't function. felt anemic. looked anemic (white-ish gums) i pulled back out of the collapse and returned to normal state, but it took a week; a weak week. my usual cfids condition. it really seemed to affect me.

also was pretty mysterious getting there. i did MapQuest and eventually wound up there. it was a pretty trip down from san francisco. and Jane was very nice. we didn't sing, but she mentioned you! i brought a book to read but wound up just talking with Jane.

one thing i wonder about- the WPI did a very particular sort of testing protocol to find XMRV. i wonder if what Dr. Montoya is doing matches their techniques. i asked jane and she mentioned the lab the blood gets sent to. i'd like to find out more about this. Salome

I went to Palo Alto on Friday to have my TEN VIALS of BLOOD drawn for Montoya's research study, which is officially titled: Gene Expresion and Immue System Dynamics of Infection In Acute and Chronic Diseases.

I was getting over a stomach bug (nausea, diarrhea and dehydration) last week, and was not thrilled about having so much blood drawn at such a bad time. But with this illness, is there EVER REALLY a good time? So I did my best to hydrate as well as I could prior to the blood draw*, and off I went.

As it turned out... everything went very smoothly with both the ride (in the car over the hill on the roller coaster of Highway 17) and the blood draw. The lab of the research facility up at Stanford was not very toxic, in terms of triggering MCS issues for me. Jane, the research coordinator, was VERY accommodating and nice. She is the research coordinator and the lab tech. She drew my blood herself, and did not hurt me at all in the process. I usually sing HERE COMES THE SUN during my blood draws, and she actually sang with me. We also sang another Beatles song as well (I WILL), as it took 2 songs and a repeat verse to fill all 10 vials with my blood.

I am relieved that the blood draw is over with, and recovering from the trip and the relapse back into stomach-bug-land. I hope that the research provides all of us who are participants in it with some useful information... in the 6 to 12 months that it will take us to know. I wish it was sooner than that, but time is going to pass either way. In a year from now, I will know exactly how many pathogens I have been hosting.

* I just want to add that Starry Eyes recommendation to drink coconut water for hydration prior to the blood draw was a great piece of advice. Thank you Starry! It was really helpful.