Blood work work up for CFIDS

[Kati]

As some of you may know I am awaiting my very first rheumy appointment after 13 months of eing sick.The appointment is January the 5th. I have asked my family dr about doing a work up blood work so I don't waste my time and the specialist time going to see her, then doing tests that she wants and then waiting another month or 2 before I am seeing her again.

I am rather impatient, frustrated and upset at the wait, and disability is pending. I am awaiting for VIP DX to send me a testing kit for XMRV, I know it's controversial, I haven't quite decided yet, but it's ordered. I have asked to send me the proper tubes for the herpes group since EBV was my initial diagnosis.

I would love to know what would be the proper blood testing that would be relevant and helpful for my rheumy to have on hand as I see her for the first time. Perhaps if you have your own initial records, that could help.

I was thinking of asking for CD4-CD8 and NK cell count, but not sure if my GP would agree.

It is so unfortunate to play doctor when we really are the patients but in this world and with this disease, we have to be our own advocate or nothing will ever happen.

Thanks, K

 

[_Kim_]

Hi Kati,

You might want to know if/what co-infections are present. At least you could consider antiviral or antibiotic treatment if that's the case.

For my initial (recent) workup with Dr. Susan Levine, she tested for EBV and HHV-6. On my second visit I asked her to screen me for other pathogens like CMV, Parvo B19, C. pneumonia, and mycoplasma.

Good luck,
Kim

 

[gracenote]

symptoms

I would love to know what would be the proper blood testing that would be relevant and helpful for my rheumy to have on hand as I see her for the first time. Perhaps if you have your own initial records, that could help. . . . It is so unfortunate to play doctor when we really are the patients but in this world and with this disease, we have to be our own advocate or nothing will ever happen.

Kati, I think this is a great idea. It might help us to help you come up with the relevant tests if we had a better idea of the types of symptoms that are part of your illness pattern. Just a thought.

 

[Kati]

Thank you both for your reply. I have symptoms all over the map, but these days upper quadrants pain (liver and spleen I suppose- I had my gallbladder removed in March) some orthostatic symptoms, not to faint but still have the need to lay down. post exertional symptoms, migraines headaches, swollen and sore lymph nodes, almost daily sore throat, recently very sore joints including small joints fingers and toes (I am on Plaquenil for that- long standing) and now wrists and knees- both of them very bothersome for the last month. My ANA has been positive for many years (last tested at least 10 years go)but negative for lupus, rheuatoid arthritis and other rheumy disease.

My current illness started with EBV in November 2008,large ovarian cyst in January 2009, removed in March with the necrotic gallbladder in March 2009, crash in April 2009 and downhill since then. Spending a good 22 hours in bed now. I would rate my performance status at 20% of normal. Chest pains and shortness of breath on exertion and sometimes on talking- echo "normal" Holter "normal"

Oh and I have gained 50 lbs in the last 2 years- embarrassing but important to mention I guess. TSH was normal but dr refused to test for t3-t4 etc... Don't know the status of blood sugar.

Do I have a good reason to be frustrated at my dr for doing NOTHING?


ETA bowel issues, I would guess irritable type- never diagnosed, my dr said never to ask for a GI referral cuz the wait time is horrendous
Also heart beating fast in the morning, in the last couple days- and some odd palpitations-

 

[gracenote]

Hashimoto's

Oh and I have gained 50 lbs in the last 2 years- embarrassing but important to mention I guess. TSH was normal but dr refused to test for t3-t4 etc...

Yes, you have good reason to be very frustrated!

I'm only going to mention one test because I should be in bed right now. Were you tested for Hashimoto's thyroiditis? It's an antibody test. Thyroid tests can come back normal but you could still have Hashimotos. Good to rule it out, if not. Mine went undiagnosed for years.

 

[Kati]

Thank you Gracenote- I too need to go to bed.

I have never been tested for Hashimoto's. Will request that as well.
Will make a list, and check it twice...

 

[glenp]

para thyroid

Para thyroid is one not many speak of, mine was high

 

[gracenote]

Anybody else?

Thank you both for your reply. I have symptoms all over the map, but these days upper quadrants pain (liver and spleen I suppose- I had my gallbladder removed in March) some orthostatic symptoms, not to faint but still have the need to lay down. post exertional symptoms, migraines headaches, swollen and sore lymph nodes, almost daily sore throat, recently very sore joints including small joints fingers and toes (I am on Plaquenil for that- long standing) and now wrists and knees- both of them very bothersome for the last month. My ANA has been positive for many years (last tested at least 10 years go)but negative for lupus, rheuatoid arthritis and other rheumy disease.

My current illness started with EBV in November 2008,large ovarian cyst in January 2009, removed in March with the necrotic gallbladder in March 2009, crash in April 2009 and downhill since then. Spending a good 22 hours in bed now. I would rate my performance status at 20% of normal. Chest pains and shortness of breath on exertion and sometimes on talking- echo "normal" Holter "normal"

Oh and I have gained 50 lbs in the last 2 years- embarrassing but important to mention I guess. TSH was normal but dr refused to test for t3-t4 etc... Don't know the status of blood sugar.

Do I have a good reason to be frustrated at my dr for doing NOTHING?


ETA bowel issues, I would guess irritable type- never diagnosed, my dr said never to ask for a GI referral cuz the wait time is horrendous
Also heart beating fast in the morning, in the last couple days- and some odd palpitations-

Anybody else have any suggestions for Kati? I seem to have gotten us started on only looking for thyroid related issues, but what other tests might be useful to her?

I'm drawing a blank right now.

 

[anne]

I was just about to post that. Dr. Peterson and Dr. Lerner believe the traditional virus tests are not sufficient. Dr. Peterson uses Wisconsin Viral Research Lab for those. Their site seems to be down now, however.

 

[Kati]

Thank you Wild Daisy, I am thinking of getting the herpes group testing along with XMRV. My dr doesn't believe that these tests are necessary. But then I want them done.



As for the other tests I will ask my dr since if she orders the test and they are done in Canada it would be ffree for me, and VIP DX is 100% me. I certainly will ask her about NK cells , CD4-CD8 ratio, cortisol, cholesterol

 

[cold_taste_of_tears]

It is so unfortunate to play doctor when we really are the patients but in this world and with this disease, we have to be our own advocate or nothing will ever happen

Perfectly put.

Consider the following to show immune dysfunction/supression + inflammation/exhaustion.

HS-CRP (Must be HS)
Isoprostanes
Inflammatory Cytokines + Chemokines <----- *Must have test
NKC Function <----- *Must have test
Lymphocyte Enumerational Panel <----- *Must have test
Oxidative injury/Apoptosis <-- Important
Nitric Oxide (NO & iNOS) <-- Important
Cell free DNA: UK test
DNA adducts (pre cancerous lesions measure chemicals etc): UK test
Mitochondrial function through ATP measurement: UK test <-- Important
T Cell count + function <-- Important
B Cell count + function <-- Important
Elastase <-- Important
Perforin
TNF-a
PKR (Protein Kinase)
RN-aseL cleavage (Red Labs Belgium/VIPdx) <-- Important

 

[zoe.a.m.]

Wow, I didn't know these VIP Dx tests existed, or that any comprehensive CFS panels existed.

For those who have used this service, how does one decide which tests to order? I see many many panel options and would hate to choose incorrectly. I haven't looked at the price list yet--I'd rather not know while I'm trying to make a plan!

This reminds me a bit of diagnos-techs where you end up wanting to do every test essentially--but cost-wise it's impossible and it just leaves me utterly confused.

 

[anne]

With the VIPdx and the Wisconsin Viral Research Group, my insurance has reimbursed the tests. It might be worth calling yours to see if they will.

 

[Kati]

For those who have used this service, how does one decide which tests to order? I see many many panel options and would hate to choose incorrectly. I haven't looked at the price list yet--I'd rather not know while I'm trying to make a plan!

Zoe, for me the problem is who will interpret those highly specific tests and what are we going to do about it? Unless you doctor is called Lerner, Klimas, Peterson, maybe Cheney, is your doctor going to be able to draft the right treatment plan for you?

Another thing to consider is should XMRV be considered the puppetmaster, are all those tests necessary? (especially if you are paying for them from your own pocket)

At the moment, I am going to my family dr asking her to perform some tests (free) before I see the specialist (rheumatologist), in order to make my diagnosis faster- I would certainly like to have them all done, but chances are my dr might agree to do my cholesterol and rheumatoid factor. She decides, I am in the passenger seat, I am afraid. But it doesn't hurt to ask and also to show that I have done my research.

 

[zoe.a.m.]

Thanks for the advice

These long lists with overlapping panels just drive me crazy. I had to walk away and remember that it's just too much!

Anne, that's incredible that your insurance company was willing to work with you! Mine is unbelievably difficult in how much I pay (privately, not through an employer), co-pays, and then the 20% or so that they don't cover.

Unless you doctor is called Lerner, Klimas, Peterson, maybe Cheney, is your doctor going to be able to draft the right treatment plan for you?

Indeed, indeed... I don't know at all what my ARNP would make of such results, or how many appt's it would take to convince her to order the tests (regardless of where the money was coming from). I currently have my hopes pinned on getting in with an infectious disease doc (my ARNP is pushing for this b/c I get the sense she feels out of her league in a big way), and hopefully he would/could order some of those tests through insurance. I'd definitely want to find out what I could be tested for via insurance and figure the rest out afterward.

True about XMRV too. Sometimes I think the stress of trying to figure out my next steps knocks me back so hard that I am better off waiting and resting!

 

[Chris]

tests in Canada...

Hi, Kati--good question, and good luck--you will need it! After having been quite recently diagnosed by a Rheumatologist in Victoria who confirmed that I had CFS without ordering or seeing any tests at all, I decided to ask my GP (who knows nothing about CFS, and refused to accept my offer of a downloaded copy of the excellent overview of the Cdn Consensus Doc , ME/CFS: A Clinical Case Definition and Guidelines for Medical Practitioners) for a Natural Killer cells test as confirmation, since that seems usually low.

My GP filled that in, but the LifeLabs girl knew nothing about it, phoned central office, said she now had the info--and I finally got a report showing that my white blood cells were fine, my red ones and hemoglobin a bit low, and my monocytes distinctly high--but nothing about NK cells. Ah well, ...

I hope you have better luck! Best, Chris.

 

[Kati]

Hi, Kati--good question, and good luck--you will need it! After having been quite recently diagnosed by a Rheumatologist in Victoria who confirmed that I had CFS without ordering or seeing any tests at all, I decided to ask my GP (who knows nothing about CFS, and refused to accept my offer of a downloaded copy of the excellent overview of the Cdn Consensus Doc , ME/CFS: A Clinical Case Definition and Guidelines for Medical Practitioners) for a Natural Killer cells test as confirmation, since that seems usually low.

My GP filled that in, but the LifeLabs girl knew nothing about it, phoned central office, said she now had the info--and I finally got a report showing that my white blood cells were fine, my red ones and hemoglobin a bit low, and my monocytes distinctly high--but nothing about NK cells. Ah well, ...

I hope you have better luck! Best, Chris.

LOL good old socialized system huh. I might just as well don't ask...

 

[Chris]

socialized medicine...

Kati, I clearly share your frustration, but remember that many PWCs on this forum have had equally lousy experiences in the US, and that overall Canada spends about 1/2 of what the US spends on health care, and that the overall statistics are much better up here. Our system obviously needs major overhaul, and desperately needs Fed and Provincial rethinking and refinancing, etc etc.--but don't undercut Obama's attempt to bring some much needed sanity to the US system, if it can be called that.

I am going to write a letter to the Vancouver Island Health Authority about the state of affairs with regard to CFS--will PM you a draft when written.
But good luck with your tests and visit with the Rheum. Best, Chris

 

[starryeyes]

That is a very comprehensive list, Cold. Thanks for writing it out. None of my doctors have ever suggested doing those tests on me and I even paid a "CFS Specialist" hundreds of dollars for half hour appt.s for many months.

 

[Kati]

Kati, I clearly share your frustration, but remember that many PWCs on this forum have had equally lousy experiences in the US, and that overall Canada spends about 1/2 of what the US spends on health care, and that the overall statistics are much better up here. Our system obviously needs major overhaul, and desperately needs Fed and Provincial rethinking and refinancing, etc etc.--but don't undercut Obama's attempt to bring some much needed sanity to the US system, if it can be called that.

I am going to write a letter to the Vancouver Island Health Authority about the state of affairs with regard to CFS--will PM you a draft when written.
But good luck with your tests and visit with the Rheum. Best, Chris

Chris, being a nurse in chemo I actually witnessed the good care our cancer patients recieved- from fast appointments for imaging to quick surgeries, to quick referrals to quick chemo/ radiation treatments. The funding for cancer comfort fund is outstanding, everybody gives for cancer. There is a trolley going around the hospital giving free tea and coffee and cookies for patients and families. Volunteer dogs, volunteer drivers taking patients from their homes, sometimes as far as Hope for their appointment in Vancouver. The research center for cancer is one of a kind and the foundation building is first class, thanks to the donation (I am sure the people giving money never expected giving this money for such a first class building with cushy chairs etc) Hundreds of active clinical trials are used on our patients that volunteer to give their bodies to the science. (once it's too late for a cure, but they still hope that the next drug will work for them)

Cancer and HIV are funded. But the problem is the rest of us/them, from the old lady that spends the night on a stretcher in the hallway, to the guy that has been waiting a year for a knee surgery to us PWC that have waited and waited all these years for recognition that we exist, there is something wrong with us and by the way there is no specialty for us. Oh well, they say.

I got to stop typing because my wrists have been killing me this week. Looking forwatd to your lettter, and by the way health authorities hold public hearings, maybe once a months or something- could be nice to actually team up and make presentation on each of them.