MONTOYA STUDY needs more participants

[JAH]

Thank you all for posting about the second study- I'd been meaning to call Jane about getting into the NIH study (I was in the first one), but kept putting it off. When I read this thread, I finally called Stanford and participated in the study today. (13 vials of blood later...) Jane told me I was the last patient, so I just squeaked in. Thanks to you guys!

JAH

 

[SaraM]

Stanford is now doing a heart study on CFS patients. It is a 2- day study, and the first day is about 5 hours. They also draw blood on both days. I got very sick after the blood draw for the previous study. Do you think it is worth it I participate in the heart study? My Ferritin is also very low and I have not been able to raise it with supplements. Does blood draw affect level of my vitamins and minerals?

 

[Timaca]

Sara~ I also had a low ferritin (along with a low Hct and low Hgb) and even taking 200 mg of elemental iron a day could not normalize my iron status. So, I ended up with a uterine ablation. It took many months of taking iron after the ablation to normalize my iron indices. I still take iron supplements 4 times a week.

You may want to check into why you cannot normalize your iron indices. Are you absorbing iron? (That is easy enough to check...blood draw checking for serum iron while fasting, then take one iron supplement and draw the blood in an hour. If you are absorbing iron the serum iron level goes up.) If you are absorbing iron OK, then the question is are you taking enough supplements? Or are you losing too much through bleeding somewhere (vaginal, or stool). I was very anemic, but was able to correct it. I hope you can too.

Best, Timaca

 

[SaraM]

Hi Timaca and thanks for the advice. I have not been losing much blood through bleeding for that last 2 years. I will do the test you mentioned to see if any thing is wrong with the absorption.Now I am very hesitant about doing the heart study because if it is not helpful, I will have to call them today to cancel my appointment . I am scheduled to do that on Monday.

 

[leela]

could someone please post info on participating in the heart study?

 

[SaraM]

I am sorry , I do not have the details on the heart study.

 

[silicon]

Hi Sara,
The study does involve a fairly comprehensive cardiovascular workup, which conceivably could be a nice thing to do, especially if one thinks they have a problem in that area. Ironically, their theory is that our cardiovascular systems are pretty much ok (Cheney's theories notwithstanding), and that there are other factors at work in ME/CFS. However, a goal of the study is to induce an over-exertion, and measure the value of a biomarker both before and after. I am ambivalent about seeing ME/CFS patients over-exert themselves! Not to mention that you have had trouble with blood draws in the past. I did over-exert myself (and definitely regretted this), but recovered after a few days, although I guess I am "high-functioning" for an ME/CFS patient.

 

[SaraM]

Hi Silicon,
I totally agree with you on over exertion, it makes most of us much worse. I had a Echo test , and two 24-hour holter monitor tests done 5 years ago with good results, showing no abnormalities. So, I guess as you said there is really nothing wrong with our cardiovascular systems. I will call Stanford tomorrow if I decide not to participate.
Best,
Sara

 

[SaraM]

Today I got a call from stanford informing me that my calcium level is high (my level :10.6 , normal range under 10.2) - I was not taking calcium around the time they did the blood draw. A few weeks ago I was talking to them about their heart study, and they told me that some of the participants in that study had higher than normal calcium level,too. On the other hand, a few months ago my annual screening showed a high calcium level; doc ordered a test for parathyroid hormone ( my level 61 - normal level 10-65). Then he tested calcium again and it was high normal this time. Here is what I found on the net today :

http://parathyroid.com/parathyroid-symptoms.htm


The important point is that 20% of people with parathyroid tumor have normal PTH with high calcium. I have an appointment for blood draw, ordered by my GP , tomorrow to test for cal, and vit D .

 

[Dreambirdie]

Jeez, where are the results for the CFS pathogen study...? It's getting close to 2 years since I had my blood drawn for that.

Anybody know what's uP?

 

[mellster]

Agreed - let's get those results in

 

[charityfundraiser]

Jeez, where are the results for the CFS pathogen study...? It's getting close to 2 years since I had my blood drawn for that.

Anybody know what's uP?

Where is the Valcyte study? We were expecting that in 2008.

 

[Dreambirdie]

Where is the Valcyte study? We were expecting that in 2008.

No idea. The study I'm in has nothing to do w Valcyte.

 

[charityfundraiser]

No idea. The study I'm in has nothing to do w Valcyte.

Yeah, I know. I participated in that study 1.5 years ago and was told I would get the results in the mail in 6 months. Just adding to the list of studies we are waiting for.

 

[leela]

I keep going to the mailbox with my fingers crossed. I'm getting a cramp.

 

[Wally]

If you participated in one of the recent CFS/ME studies you can contact the research center where the testing was conducted and ask if they can provide you with a current status update on the study(s).

Here is my understanding of the current estimate for completion of the Stanford/Lipkin gene expression/pathogen study. Testing is currently underway and the earliest the study is slated to be completed is June. Individual participants will receive a written report with their own test results. However, the report may not be in a format that can be easily interpreted. Therefore, some additional assistance will probably be offered to help with interpretaton of these results.

The NIH study, overseen by Dr. Lipkin, has completed the colletion of all the required samples and testing has begun. Estimated time for completion of the study is in 2012. Publication of the final results of the study will probably take about one year from the date the study is completed. Participants will not receive individual test results from this study.

The information provided above is my personal understanding of the current status of these two studies. Based on my past involvement with research studies, the dates given for completion and publication of a study are always estimates and often seem to be more like a moving target.

 

[Wally]

It is my understanding that the second Valcyte study paper is currently undergoing a review process in preparation for submission for publication.

 

[August59]

I thought I read (and it may be in this thread somewhere) that they wanted some participants to stay on Valcyte for at least 18 months because some of the improvements were not showing up until long term treatment was in place. I suppose it cold be playing off of Dr. Lerner use of Valtrex for at least 18 months or longer. So, I got the impression that they wanted to compare 6month, 12 month and 18 month results, but that all has been completed now and it is going through whatever it has to go through before publication. I could be wrong of course.

 

[Wally]

It is my understanding that just like Rituxan, they have found that in some cases the antivirals have resulted in symptom improvement months after administration of the drug had been stopped. If no one else comes up with a link to where this has been stated, I will try to going searching from the information. My foggy brain thinks this may have been addressed in one of the Montoya, Kogelnik or Lerner talks, but this is just a guess. Really wiped out today, so I will try to check into this tomorrow.

Edit - I believe you are correct that for some people it has been found that the drugs need to administered for longer than 6 months. This also correlates to what Dr. Lerner and Dr. Dantini have said about their own experience with using these antivirals.

 

[August59]

It sure would be nice to get some results from some of these studies. I do not expect all of thes studies to have an outcome that is going to stand the scientific community on ears, but if can start getting some concrete abnormalaties here and there. Maybe after a few a pattern will emerge. I don't like the idea of cytokines being so sought after because everything in the body potentially effects them.

But if we could had a cytokine pattern with a pathogen pattern, with an electrolyte pattern, with a hormone pattern and add in the proteins from the Spinal Fluid studies, I would think we would at least be off to a good start. It may not do anything but clear up subset categories, but that is a given that there are subsets among us and it's possible that needs to take place first. There are a lot of things that need to be done, but the funding siuation to put it bluntly just pisses me off.

I'm sorry if this offends someone, but there was a NIH subsidized fund completeed the other day that looked at the affects of penis size in gay men and who was more inclined to be the bottom partner as opposed to the top partner. There may be a time in the future that this has merit, but damn I'm tired of fealing like I am dying every morning when I open my eyes and in some case I wished they had not opened..