My lab results from Dr. Bieger

[eric_s]

Hi Heapsreal

Thanks, it's interesting to be able to compare the results. It seems your values are evelvated, while mine are low. Also interesting to see how yours have come down with treatment.

As far as NK cell function goes, i've had this test (in the summary it's under "NK cell function", whereas the other immunological values i mentioned are under "Immune status" (T cells absolute, CD4 absolute, CD8 absolute, NK cells absolute) or "Inflammation/Cytokines" (COX-2, NFkB):

NK cells (relative).............6.............% Lympho..............6 - 29 (normal range)

I don't know if it's the same test you had for NK cell activity and i didn't mention it in my first post, because it was not marked as abnormal. I'm right on the edge of the normal range in this one.

 

[eric_s]

Hi

I will discuss everything with Dr. Bieger on the phone on 14/7. I hope by then he will have all the results, including XMRV.

In the meantime, i'm interested in anybody's values for T cell count, CD4 count, CD8 count, any NK cell values, TNF alpha, IL-8, COX-2 and NFkB, if you want to share them.

 

[katim]

Hi Eric

I am very curious about your consultation/tests at Dr. Bieger.
As I am living in Denmark with no cfs specialist I am
considering seeing either De Meirleir or maybe Dr. W Bieger.
How long did you have to wait for an appointment, and what
was the cost for the consultation and your tests.
Nice to hear how another european try to handle this
disease.

Regards

Karin

 

[eric_s]

Hi Karin

I didn't have to wait long, maybe 2 or 3 weeks, if i remember correctly. I haven't recieved the bill yet, so i don't know how much it will be, but we talked about the costs, and he said he would give me only the tests he deems most necessary in my case, so that it will be around 500 Euros, all in all.

I got a number of blood tests, the "Neurostress Test" (that's mostly about hormones, i think, but i haven't got these results yet) and XMRV (results not in yet).

But bear in mind that the XMRV test through VIP Dx is probably more reliable at this point, because the lab Dr. Bieger works with for XMRV has only about half a year ago started to develop the current, apparently working assay. Nevertheless i think it's a good lab with experienced people.

For me it's a bit of a problem, because the Swiss health insurance doesn't cover costs for treatments abroad, unless it's an emergency or something that's not available domestically. It is not available domestically, but it's likely they will just pretend it is and not pay. As a EU citizen you might be in a better position there.

I'm also glad Dr. Bieger seems to be pretty committed to ME/CFS.

I can't tell you which one is better for you (Dr. De Meirleir or Dr. Bieger). Dr. Bieger said he works along the lines of Dr. Lerner, he thinks antiviral treatments are the most interesting approach. Here you can download a brochure (in German) where he talks about ME/CFS, it's quite interesting. About the suspected mechanisms and treatment approaches, etc. And here's a video where he talks about ME/CFS. Don't be misled by the fact that he talks about burn out, etc. on his website, he totally understands ME/CFS is a physical disease and has nothing to do with burn out and similar problems. If it's possible i will probably visit Dr. De Meirleir as well, not so much because i'm interested in his treatments, but because i would like to have additional tests that Dr. Bieger doesn't do, like tilt table testing, Holter EKG and others. What is good about Dr. Bieger is that he seems to allocate enough time per visit, in my case i was there for an hour or more and he will answer your questions, tell you a lot of stuff, etc. I hope this will not have to change if more people get to want to see him now.

 

[eric_s]

Btw, Karin, there's a good ME/CFS organisation in Denmark. If you're not a member yet, consider joining them... We can make much more of a difference with more members...

 

[katim]

Hi Eric,

Thanks a mill for the info. I am a member of the danish ME/CFS org. it is very informativ and yes the more
the better.
I like to hear that Dr. Bieger give you about an hour for your first visit, and that he is specialising in neurology,
which is also what I need.
I know that as far as the test for XMRV viruses, Vipdx or UNEVX might be a more reliable bet, but the prize is quite
different, also because of the shipping from Denmark.
I am very grateful to you for taking time to help out, here I am almost housebound with more and more brainfog plus a son 21 and a daughter 17 whom are showing same signs as I did some years ago, so I unfortunately have limited energy to help.

 

[eric_s]

I had an appointment to discuss the results with Dr. Bieger for yesterday at 4, but when i called, all the lines were busy. When i called about 10 minutes later, he was already gone, i think there was some mistake. So they told me to call again today and now i talked with him for about 10 minutes. But it looks as if my results for the "Neurostress-Test", XMRV and viral reactivation had not made it to his desk yet and so he said he thinks he has them and will email them to me later today. And then i can call him on monday to discuss things.

As far as my immunological results go, he didn't seem to think they show much. He said there are low T-cells, but all in all it does not indicate anything concrete and we should wait for the other results. I felt he did not want to spend much time on the phone at this moment and so i could not ask him anything more, i would have wanted to know in what percentage of healthy people you would find similar values like mine, and if on average he sees a significant difference in the immunological results between healthy people and people with ME/CFS.

 

[Enid]

Thanks for sharing eric - as you know nothing here so following KdeM and Dr Bieger tests and treatments are really helpful.

 

[eric_s]

Yes, btw. in September Dr. Bieger will present at Fatigatio e.V. (German ME/CFS association)'s conference. The title will be "XMRV in Germany, what do we know?".

Bob, you might want to add this to the XMRV calendar, if you read this message.

 

[heapsreal]

I will be keeping an eye on this thread to see your results. I hope things go well for you.

cheers!!!

 

[eric_s]

Hi, i have almost all the results now (one or two were still missing in the report he sent me on Friday evening).

The NeuroStress test cosists of these:

Adrenaline
Noradrenaline
Norad/Adrenaline
Dopamin
DOPAC
Serotonin
5 hydroxyindol acetic acid
Cortisol
DHEA

Some of them are measured at different times during the day.

I had elevated adrenaline, slightly low noradrenaline and so norad/adrenaline was lower than the normal range too. Also one of the DHEA values (i think it was during the day) was low.

What i don't really understand is that in the report he wrote Dopamin is slightly too low, when the value is still inside the normal range, while for DHEA he wrote it's normal, when it's clearly out of the normal range in one timepoint.

Then i had tests for EBV reactivation. He did EBV DNA (PCR), EBER mRNA, LMP1 mRNA and EBNA1 mRNA. All of them were negative.

Then, the most interesting one, XMRV... I had an antibody test (Western Blot) and "virus/culture and RNA". Both of them were negative.

He also tested for MxA, under the title "antiviral immune activation". This one was positive. In the report he wrote that MxA is an unspecific marker for antiviral immune activation. I read a bit and i think it's a way the immune system fights RNA viruses (which are 80% of all viruses).

I will discuss things with him on the phone today. I'm not unhappy XMRV was negative, i mean who wants to have such a virus. On the other hand he also says himself that the development of the test is not finished yet and that false negatives are not uncommon. So i don't give this result too much of importance at this point.

I think it's interesting that MxA is positive, so it looks as if the body is trying to fight a viral infection. So many things in ME/CFS point in this direction.

It reminds me a bit of what he wrote with regards to inflammation. He said CRPs and TNF alpha and IL-8 are normal, so that that there is no sign of inflammation. But then, on the other hand, NFkB, which he called "the universal cellular inflammation switch", and also COX-2 were up, which he said might be a sign for "silent inflammation".

So, in my case, no virus found, but signs for antiviral immune activation, and signs both for and against inflammation...

 

[heapsreal]

Hi, i have almost all the results now (one or two were still missing in the report he sent me on Friday evening).

The NeuroStress test cosists of these:

Adrenaline
Noradrenaline
Norad/Adrenaline
Dopamin
DOPAC
Serotonin
5 hydroxyindol acetic acid
Cortisol
DHEA

Some of them are measured at different times during the day.

I had elevated adrenaline, slightly low noradrenaline and so norad/adrenaline was lower than the normal range too. Also one of the DHEA values (i think it was during the day) was low.

What i don't really understand is that in the report he wrote Dopamin is slightly too low, when the value is still inside the normal range, while for DHEA he wrote it's normal, when it's clearly out of the normal range in one timepoint.

Then i had tests for EBV reactivation. He did EBV DNA (PCR), EBER mRNA, LMP1 mRNA and EBNA1 mRNA. All of them were negative.

Then, the most interesting one, XMRV... I had an antibody test (Western Blot) and "virus/culture and RNA". Both of them were negative.

He also tested for MxA, under the title "antiviral immune activation". This one was positive. In the report he wrote that MxA is an unspecific marker for antiviral immune activation. I read a bit and i think it's a way the immune system fights RNA viruses (which are 80% of all viruses).

I will discuss things with him on the phone today. I'm not unhappy XMRV was negative, i mean who wants to have such a virus. On the other hand he also says himself that the development of the test is not finished yet and that false negatives are not uncommon. So i don't give this result too much of importance at this point.

I think it's interesting that MxA is positive, so it looks as if the body is trying to fight a viral infection. So many things in ME/CFS point in this direction.

It reminds me a bit of what he wrote with regards to inflammation. He said CRPs and TNF alpha and IL-8 are normal, so that that there is no sign of inflammation. But then, on the other hand, NFkB, which he called "the universal cellular inflammation switch", and also COX-2 were up, which he said might be a sign for "silent inflammation".

So, in my case, no virus found, but signs for antiviral immune activation, and signs both for and against inflammation...

Maybe just maybe xmrv positive cfsers have secondary immune dysfunction due to xmrv and those neg to xmrx byt still show viral reactivation and nk dysfunction are primary immune supressed. Maybe its going to come down to whats causing the immune supression be it primary or negatively supresed.

just a thought,

cheers!!!

 

[heapsreal]

also get cmv and hhv6 testsed too if u can

 

[Sasha]

I'm not unhappy XMRV was negative, i mean who wants to have such a virus. On the other hand he also says himself that the development of the test is not finished yet and that false negatives are not uncommon. So i don't give this result too much of importance at this point.

I'm glad you're not unhappy about this, eric - I understand both the perspectives of not wanting a retrovirus but wanting to have something identifiable that could then be worked on medically. What a dilemma to be in.

 

[eric_s]

also get cmv and hhv6 testsed too if u can

Yes, i will ask him about that, good idea.

 

[Enid]

Thanks very much eric for your information at Post 31 - "signs of antiviral immune activation" - the body trying to fight a viral infection seems to come across loud and clear. Hope your own findings are leading to good treatment for you now.

 

[eric_s]

I'm glad you're not unhappy about this, eric - I understand both the perspectives of not wanting a retrovirus but wanting to have something identifiable that could then be worked on medically. What a dilemma to be in.

Yes, i think at this point we just have to understand that these tests are not reliable yet and also the role of XMRV is not clear yet. So i will wait and see and of course we should also be active as far as we can and support the research process. If XMRV is the single cause of ME/CFS, then i'm pretty sure i will have it, and if it's not, then maybe you are better off if you have something else. On the other hand it could also take them longer to figure the "something else" out, but they might learn a lot from "XMRV ME/CFS", which could speed up the process. I'm just taking this the way it comes and deal with the situation as it develops.

 

[eric_s]

Thanks very much eric for your information at Post 31 - "signs of antiviral immune activation" - the body trying to fight a viral infection seems to come across loud and clear. Hope your own findings are leading to good treatment for you now.

Thank you. Yes, i would be intrested to know how many of us test positive for MxA and what percentage of healthy people have it. I have never heard of MxA before.

 

[Nina]

If XMRV is the single cause of ME/CFS, then i'm pretty sure i will have it, and if it's not, then maybe you are better off if you have something else.

That's how I see it, too, Eric. I haven't got my XMRV result from Bieger yet but am positive by antibodies via VIPdx. Will be interesting to see if results match.

Thanks for reporting here, I'm curious what Bieger will say in your phone consult!

All the best.

 

[eric_s]

Thanks. I rarely see you over here ;-) I guess VIP Dx finds it a bit more often than the lab Dr. Bieger is working with, but they might be catching up. It will be interesting to compare.