In Belgium to see Dr de Meirleir

[Fritz18]

I just received my Borrelia EliSpot results:

1 Borrelia b. Full Antigen: 2 SI (< 2)
1 Borrelia b. OSP Mix: 1 SI (< 2)
1 Borrelia burgdorferi LFA-1: 3 SI (<2)

My CFS started after a throat infection and I have never had tick bites as far as I know. My bartonella test was negative. Does anyone know what the above could indicate?

Many thanks

 

[Helen]

Just wondering why, in diagnostic of Lyme, is not usually used dark field microscopy (it seems it can visualize the spirochetes, that would be the final proof that someone has or not Lyme). And we did not do that test...

So far it isn´t seen as valid. One thing that has been mentioned is that the amount of blood that is used is often too small to show any spirochetes. As far as I can see, spirochetes seen in a dark field microscopy, can´t be anything else than an active Lyme infection. A positive result should be positive, but a negative may be a false result.

@Fritz18 , Welcome to the forum. What about starting your own thread? It will be more visible and I´m sure many are interested in following you . A moderator could help you to move your posts.

 

[Fritz18]

Thanks for the tip, Helen. I just started my own thread.

 

[JES]

I just received my Borrelia EliSpot results:

1 Borrelia b. Full Antigen: 2 SI (< 2)
1 Borrelia b. OSP Mix: 1 SI (< 2)
1 Borrelia burgdorferi LFA-1: 3 SI (<2)

My CFS started after a throat infection and I have never had tick bites as far as I know. My bartonella test was negative. Does anyone know what the above could indicate?

Many thanks

Probably it indicates nothing, as only one of your three tests is slightly above reference range. Usually if your results are near the reference range, you might as well throw a dice and obtain an equally good indicator. I have been tested in multiple places for Borrelia and even the same test can show different results in different labs. In some tests I had values slightly above reference range, in most others I had a negative. Unless there exists clear scores above reference limit, I wouldn't take it as a sign that you have Lyme, although these tests can never exclude it 100% either.

 

[adelheid55]

Well, our daughter has 2,2, 1 as results in the ArminLabs test and was told that she has had Lyme for a very long time.
As I understood the borrelias are able to turn around the immune System so that the results are very low in numbers. But it doesn't mean you don't have Lyme.

 

[frederic83]

Well, our daughter has 2,2, 1 as results in the ArminLabs test and was told that she has had Lyme for a very long time.

KDM told you that?

 

[adelheid55]

Yes, he did. And the more I read about borrelias the more I could understand what they are able to do in interfering nearly all systems of the body. For example you have always cold hands and feet or feel generally very cold. That's what borrelias like so they interfere with your temperature system(I don't know the right word for this).
Or struggling with hormonal problems etc.
But you didn't want to know about this so excuse my long lecture...

 

[JES]

Not sure I would be too confident on KDM's diagnosis. He is specialized in treating with antibiotics so he only sees bacteria as a cause of CFS, the same way as Dr. Chia only sees enterovirus in patients, etc.

If the test says 2,2,1 it means it's right on the threshold. From what I have heard, almost anyone can get a positive result from a Lyme lab in Germany, so at least if the values are on the thresholds I would be very skeptical. I've seen many ArminLabs results posted on various forums and in most of them the Lyme tests are positive.

 

[Biarritz13]

Not sure I would be too confident on KDM's diagnosis. He is specialized in treating with antibiotics so he only sees bacteria as a cause of CFS, the same way as Dr. Chia only sees enterovirus in patients, etc.

If the test says 2,2,1 it means it's right on the threshold. From what I have heard, almost anyone can get a positive result from a Lyme lab in Germany, so at least if the values are on the thresholds I would be very skeptical. I've seen many ArminLabs results posted on various forums and in most of them the Lyme tests are positive.

Well I know a small group of sick french people (including myself) who sent their blood to Arminlabs and only 33% reported to be positive.

 

[Helen]

Not sure I would be too confident on KDM's diagnosis. He is specialized in treating with antibiotics so he only sees bacteria as a cause of CFS,

As a patient of KDM I have to protest. I´m pretty sure that in the future we´ll read about his view on the cause of ME/CFS.

Re: diagnosing Borrelia, KDM uses a panel of lab tests to diagnose the infection.

 

[adelheid55]

I don't want to discuss KDM here. Just as Helen said there are many parameters which are tested and all of these together will lead to the diagnosis, in our daughter' case Lyme, in my case something completely different.
I think everybody has to find their way to health.

 

[frederic83]

Not sure I would be too confident on KDM's diagnosis. He is specialized in treating with antibiotics so he only sees bacteria as a cause of CFS, the same way as Dr. Chia only sees enterovirus in patients, etc.

That's the problem. The best is to test them all but I'm doubtful about some tests. It is time consuming and costs money, though.

 

[adelheid55]

If KDM should be able to find out what your problems(plural!) really are there have to be lots of tests. I didn't see a useless one.
And you can always say whether you want them to be done or not.
And nobody is forced to see him.

 

[adelheid55]

Here I'm once again. I didn't want to come over so harsh.
Our daughter has been ill since she was born. And always something to do with her immune system. Every doctor - and there were many- and every hospital, of which there were what we thought to be good ones, were not able to read their own tests which showed many irregularities.
I couldn't understand it.
Then she became very ill 3 years ago. And we started to search for a doctor who was able to help her, to know his stuff. I don't know whether she will be healthy again. But we believe the best chances and possibilities are with Dr. de Meirleir.
Sorry Valentijn, it's your thread... I will stop here.

 

[Daffodil]

I just received my Borrelia EliSpot results:

1 Borrelia b. Full Antigen: 2 SI (< 2)
1 Borrelia b. OSP Mix: 1 SI (< 2)
1 Borrelia burgdorferi LFA-1: 3 SI (<2)

My CFS started after a throat infection and I have never had tick bites as far as I know. My bartonella test was negative. Does anyone know what the above could indicate?

Many thanks

i think it just means you have had the infection for a long time...but i am biased cuz after being sick 22 yrs and getting to the almost-dead point, KDM was the only person who could save me....and i saw many others.

if he says its lyme, i would believe it

 

[Thinktank]

My differences:

- Rifaximin, Mesalazine, Liposomal, Quercumin
+ Lysine, Zelitrex, Isoprinosine
The rest is the same

Hi Sorin, have you started the zelitrex (Valaciclovir, aka valtrex in the US) yet? Do you notice anything from it?
KDM thinks i might have a herpes virus that we missed, so he prescibed me 1 month of zelitrex to try, 500mg 3 x / day.

I've never really investigated viruses because i've always tested negative. I once had a very low titer on CMV but nothing else.
Anyone else here on Valaciclovir?

KDM also tested ANA again but no specific antibodies, probably because my C4a came back quite low and my facial muscles along my mouth corners feel numb, sometimes even my tongue gets kinda paralyzed. Also having problems swallowing lately.
Lyme, mycoplasma, autoimmune tendencies, possible (unidentified) virus(es)? I'm screwed lol.

 

[Biarritz13]

Hi Sorin, have you started the zelitrex (Valaciclovir, aka valcyte in the US) yet? Do you notice anything from it?
KDM thinks i might have a herpes virus that we missed, so he prescibed me 1 month of zelitrex to try, 500mg 3 x / day.

I've never really investigated viruses because i've always tested negative. I once had a very low titer on CMV but nothing else.
Anyone else here on Valaciclovir?

Valaciclovir is Valtrex

 

[Thinktank]

Ah yes, i've corrected it, thanks.

 

[sorin]

Hi Sorin, have you started the zelitrex (Valaciclovir, aka valtrex in the US) yet? Do you notice anything from it?
KDM thinks i might have a herpes virus that we missed, so he prescibed me 1 month of zelitrex to try, 500mg 3 x / day.

I've never really investigated viruses because i've always tested negative. I once had a very low titer on CMV but nothing else.
Anyone else here on Valaciclovir?

KDM also tested ANA again but no specific antibodies, probably because my C4a came back quite low and my facial muscles along my mouth corners feel numb, sometimes even my tongue gets kinda paralyzed. Also having problems swallowing lately.
Lyme, mycoplasma, autoimmune tendencies, possible (unidentified) virus(es)? I'm screwed lol.

@Thinktank

I started with Valtrex/Zelitrex about 4 months ago, the same dosage as you. First weeks it gave me dizziness and nausea but after about 2 weeks I think I started to feel these at lower intensity. After 4 months of taking this Valtrex I can say that my energy level is higher, my immunity is better. When I stopped this for a few days, I started to feel fatigued again. CMV in my case gave huge values for IgG but negative on PCR and IgM. In your case the herpes virus could be EBV, not necessary CMV. Did you do Elispot CMV and Elispot EBV at Armin Labs?

 

[Thinktank]

Thanks for sharing your experience.
No, i had it done with REDlabs, not with armin labs.

What was the dose you were taking? Did you start at the prescribed dose or lower than that?