Resource Getting Your Blood Volume Tested Properly Using the Daxor Test

[Cort]

Cort submitted a new resource:

Getting Your Blood Volume Tested Properly Using the Daxor Test - The only way to get your blood volume tested accurately

“For the first time, physicians have access to technology which enables them to obtain blood volume measurement rapidly and with a high degree of precision.” – Daxor Corporation Blood volume is often low in ME/CFS, but it was not until recently that an accurate and easy method of measuring it was possible. Some people with Chronic Fatigue Syndrome (ME/CFS) have been doing a bit more travel lately. It used to be that blood volume measurements were done at local hospitals, but with the advent of...

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[jsuzor]

I read about this on the original email or Facebook link. I lost the original and I spoke with Richard Dunn, the operations manager for Daxor. He said, that the machine is no longer in Orlando. It is in Weston (Ft. Lauderdale), at Cleveland Clinic. They may have it in Jacksonville at Mayo Clinic eventually. I am now experiencing A Fib and angina which is a recent diagnosis.

I saw a Cardio doc today. I told him about ME/CFS and low blood volume. He had little feedback on that subject. Now I have to do tests that are probably a waste of time. I wish that I could have the Daxor test. I am in the Orlando/Daytona area.

One of CortJohnson's members said something about a Bio Z test. I have been looking for more information about that test and wonder if it is a good way to test blood volume. While searching for more info I think I found the testing eqipment with a trademark of PhysioFlow. It is a non invasive cardiac output monitor.

I am in over my head. Any feedback would be appreciated. I may just call Richard Dunn back and ask him what he thinks of it, but I feel a little inadequate and overwhelmed. I am new with the smartphone, so I hope autocorrect does not mess this up to badly.

 

[Cort]

I wish I knew more about this Jsuzor - hopefully somebody does. I would give Dunn a try. I talked to either him or the research side of Daxor - the guy was very open and willing to talk.

I read about this on the original email or Facebook link. I lost the original and I spoke with Richard Dunn, the operations manager for Daxor. He said, that the machine is no longer in Orlando. It is in Weston (Ft. Lauderdale), at Cleveland Clinic. They may have it in Jacksonville at Mayo Clinic eventually. I am now experiencing A Fib and angina which is a recent diagnosis. I saw a Cardio doc today. I told him about ME/CFS and low blood volume. He had little feedback on that subject. Now I have to do tests that are probably a waste of time. I wish that I could have the Daxor test. I am in the Orlando/Daytona area. One of CortJohnson's members said something about a Bio Z test. I have been looking for more information about that test and wonder if it is a good way to test blood volume. While searching for more info I think I found the testing eqipment with a trademark of PhysioFlow. It is a non invasive cardiac output monitor. I am in over my head. Any feedback would be appreciated. I may just call Richard Dunn back and ask him what he thinks of it, but I feel a little inadequate and overwhelmed. I am new with the smartphone, so I hope autocorrect does not mess this up to badly.

 

[jsuzor]

I wish I knew more about this Jsuzor - hopefully somebody does. I would give Dunn a try. I talked to either him or the research side of Daxor - the guy was very open and willing to talk.

 

[jsuzor]

Thanks Cort. I did read somewhere that a member said, that she was given isosorbide mononitrate, which is Imdur. She said, she got relief for her ischemic heart pain. Once I finish all of the heart tests okay, maybe my new Cardio doc would consider giving me that. The member here said, that it helped her fatigue also. I wonder who the doc was in Orlando that had the Daxor machine for research. THANKS FOR ALL OF YOUR HELP!

 

[Carollynn]

Back when this article was first posted I brought it to my GP to discuss getting my blood volume tested and then beginning IV Saline. While I show many signs and symptoms of orthostatic intolerance, since I had fainted on tilt table testing he would be able to code the request for insurance coverage through that. The blood volume test would have been out of pocket, but he gladly wrote an Rx for it (something you need if you can find a place to do it.) It made sense to measure a bad level before beginning treatment. Looking at the Daxor website I contacted the hospital nearest me to try to set up an appointment. I was sent around to many different departments but no one knew what a Daxor was or, apparently, used it to measure blood volume.

I contacted Daxor directly and the sales person there was helpful, supplying me with medical code numbers for the procedure that should have helped locate the department at that hospital that could do the procedure. No luck with any of it.

At the time, Daxor's website appeared to suggest that the company was for sale, so I think there was not the commitment to follow-through you'd hope for. That situation may have changed in the past two years. I went ahead and began weekly IV-saline infusions without the blood volume test.

 

[Merida]

This is a really important topic in my mind. Was so glad to learn about Magnetic resonance cardiac tagging ie published by Julia Newton's group at Newcastle university, UK. It looks like this evaluation is being done at Johns Hopkins, university of Florida, Duke, UCLA???? Anyone had this?

Also, if blood volume is low, why? Is this a kidney thing???? Interesting that Dr. Paul St. Amand hypothesized years ago that Fibro people had a kidney issue - ie kidneys were not eliminating phosphates as they should. Interesting that Guaifenesin, what he recommended, is an old gout med. And it is appreciated that people with gout have a higher incidence of heart disease. I have calcified phleboliths in my abdomen - ie calcium phosphate deposits in the abdominal veins.

Whew.

 

[Merida]

@Carollynn, did the IV saline help you?

 

[weyland]

Also, if blood volume is low, why? Is this a kidney thing????

Research has shown there is some evidence of lower aldosterone in ME patients. Anecdotally, at least one ME clinician has noted that most of his patients have little to no detectable ADH in their blood. Either or both of these could contribute to volume loss.

 

[Remy]

@Carollynn, did the IV saline help you?

I'm not Carollynn, but I can say that IV saline did seem to help me. I had 2L of saline every other week with cidofovir infusions with Dr Lerner. By the end, I was feeling much better and in retrospect, it was as likely the saline as the cidofovir that helped me. I'm just burned out on IVs at the moment or I'd probably still do them.

 

[Cort]

Back when this article was first posted I brought it to my GP to discuss getting my blood volume tested and then beginning IV Saline. While I show many signs and symptoms of orthostatic intolerance, since I had fainted on tilt table testing he would be able to code the request for insurance coverage through that. The blood volume test would have been out of pocket, but he gladly wrote an Rx for it (something you need if you can find a place to do it.) It made sense to measure a bad level before beginning treatment. Looking at the Daxor website I contacted the hospital nearest me to try to set up an appointment. I was sent around to many different departments but no one knew what a Daxor was or, apparently, used it to measure blood volume.

I contacted Daxor directly and the sales person there was helpful, supplying me with medical code numbers for the procedure that should have helped locate the department at that hospital that could do the procedure. No luck with any of it.

At the time, Daxor's website appeared to suggest that the company was for sale, so I think there was not the commitment to follow-through you'd hope for. That situation may have changed in the past two years. I went ahead and began weekly IV-saline infusions without the blood volume test.

What a lot of work! Sorry that it didn't turn out. Yes, From what I've heard Daxor is the process of being sold or is trying to be sold and things are a little crazy there. It's not a very big company I don't think.

Daxor thinks if everyone had a blood volume test prior to surgery a lot of problems including deaths would averted. I don't think blood volume is on the radar screen of many doctors though.

 

[Cort]

Check out a new blog on the possible causes of low blood volume

http://www.healthrising.org/forums/threads/the-blood-volume-paradox-in-chronic-fatigue-syndrome-me-cfs-and-pots.4704/

 

[Merida]

@Cort
Think this discussion is extremely important. Thank you. Finally we may be approaching the " common denominator" for 'unexplainable' chronic fatigue. An aside : There are many variations in heart structure - like reversal of the great vessels, and more. Hope someone looks at this, too. I expect kidneys may be likewise.

I have searched and searched for genetic syndromes that include scoliosis, heart, kidney, vertebral, gut malrotations, neurological issues, etc. Best I could come up with was chromosome 22q11.2 deletions. Whew.