What specific tests should I ask my doctor to run?

[minkeygirl]

I want to have some tests run to determine what virus I may have/had. Can anyone tell me what specific tests to ask for? Does anyone know what tests Dr. Dantini uses? I know I've had some done a few years ago for CMV and EBV but I don't know which specific tests to ask for. Thanks

 

[Gamboa]

Hi Minkeygirl,

A lot depends on what country you live in and what type of doctor you are seeing.

I live in Canada and my ME/CFS specialist follows the tests recommended in the Canadian Consensus Criteria document. My GP had to rule out certain illnesses before I went to the specialist and she used the CCC (with my help).Here is the link to the overview of the CCC document:

http://www.mefmaction.com/images/stories/Overviews/ME-Overview.pdf

There is a page in this that lists what tests should be done to rule out other diseases prior to getting a diagnosis of ME/CFS.

I've noticed in the US the doctors do a lot more testing for infectious diseases. I used to work in hospital microbiology laboratory and my experience is that they don't know anything about ME/CFS and don't advocate getting tested for various viruses. Maybe it depends on the doctor.

What have you had done so far? Where do you live?

Gamboa

 

[minkeygirl]

Hi Gamboa. I live in California. I've was DX'd in 96 so there is no question that I have CFS. I've done everything I could do that was available years ago and recently I"ve been waiting for something new to come along. I did go through chelation a few years ago which helped with some minor things but nothing has done anything to help me.

As my health declines I need to look at some options so that I'm not completely disabled in 10 or 15 years since I"m pretty sick right now.

I do not see a specialist since most do not take Medicare HMO's but I am looking at Dr. Dantini's protocol and thought if I had the tests run prior to my calling him that would save a step and some money since for me, it's all about money.

I see my PCP in a few weeks. She is pretty smart so I want to give her some documentation and get her to find someone for me if possible (I'm not too optimistic since I know all the players in my area).

So I just want to know what specific tests to run for CMV, HBV, HHV6. Not interested in XMRV right now.

Minkeygirl

 

[WillowJ]

I didn't get most of my actual results so I can't answer your question the way you asked it. Probably someone else can do that. However I can offer an alternate suggestion.

your PCP could do a consult with your intended physician or with Dr. Jose Montoya, Dr. Andreas Kogelnik, or Dr. A Martin Lerner, so she would know what tests to run and which labs could give most reliable results. Montoya and Kogelnik are in CA, and they are associated with Stanford. Lerner is in the Detroit area and he used to teach at Wayne State. There is also Dr. John Chia in CA who focuses on enterovirus, which would be another option to look at.

You are very well-located in CA. Pacific Fatigue Lab is there, too.

best,
WillowJ

 

[Grape Funk]

I just got my blood work done at Quest Labs on monday. I drew Herpes viruses 1-8 not including 7 as they did not have a test. I forget all of them right now, but getting the results Friday morning so i'll post what i got specifically. It also depends on insurance as to whether they include certain blood tests. I know if i sent my blood to Wisconsin Viral Research Group (Lab) (Dr. Peterson sends patient's blood there), it would have been thousands of dollars. Here's the tests i remember off top of the dome:

HSV 1 + 2 IgG, IgM
CMV IgG, IgM
EBV VCA IgG, EA IgG, NA IgG, NA IgM
VZV IgG, IgM
HHv6 IgG, IgM
HH8(Kaposi's sarcoma) IgG

Mycoplasma IgG, IgM
Chlamydia IgG, IgM

Vitamins
B12
Folic Acid
D

Estrogen (E2) Total
Testo Free
Testo Total

Lymphocyte enumeration (cd4, cd8, ratio, %, all that good stuff )

You might want to check Enterovirus, Coxsackie B and parvo B19 as well, but idk how sensitive these tests are. Also if you can, inquire about Natural Killer Cell Functionality as well.

 

[minkeygirl]

Grape Funk, thanks for the information. I'll be curious to see your results and what you end up doing. I've had many of these previously by the same lab so should be ok with them.

Willowj, thanks for your help also, but I am far too sick to travel. I alsohave limited funds and no help so I have to do what I can locally. I'll tuck this info away.

Minkeygirl

 

[Timaca]

Look at the "Infections" tab of this website. It lists various infections, the tests to order and the labs to run them at: http://chronicfatigue.stanford.edu/

Best, Timaca

 

[minkeygirl]

Timaca! Thanks so much! This helps a lot. Minkeygirl

This is perfect http://www.treatmentcenterforcfs.com/FAQ/index.html#Tests