I am booked in to see Prof. de Meirleir in January

[SanDiego#1]

snowathlete

Just a note:

1. ELASTASE EXPRESSION ASSAY (inflammation)
3. Soluble CD14

These two tests are useful markers. They were both high for me before treatment and normalized after a year. You might want to consider them. The results of these tests can also be relevant to the types of treatment prescribed.

Best,
Sushi

Sushi- would you contact me PC??

SanDiego

 

[cigana]

rickettsia testing.. coexisting rickettsia seems to be extremely high in ME/CFS people but for some reason its something not many seem to know or is being paid much attention to but which should probably be due to how many of us have it. My CFS specialist (in Sth Australia was having his ME/CFS patients tested for it (he sent away blood of hundreds of his CFS patients for testing for it throu one of our common blood labs) and found that around 50% of his patients came back with postive (coexisting?) rickettsia and improved some on treating it. I know Rickettsia was also studied a lot in ME/CFS by a ME/CFS specialist in Sth Africa too (Dr Jadin?)... so I dont know if this issue is a world wide one or just more in some countries. It may not have been looked at yet in other countries. Its one of those areas which needs far more study into. I myself thou was one of the half of us (in Sth Aust) who dont test positive to Rickettsia. Not Rickettsia isnt at all common in my country, I'd never heard of anyone having it before so why did 50% of those with ME/CFS here have it? but they did.

I suggest to look up to see if it occurs in your country.

KDM found I had Rickettsia.

 

[snowathlete]

Thanks taniaaust1 for bringing up Rickettsia.

I think from the little I read on wikipedia, it sounds like this occurs in certain places, but it doesnt go into details on which places, so i dont know if its a problem in the UK or not.
Cigana, can I ask where in the world you are?

I'll have to ask KDM about it. As you point out taniaaust1 he seems to specialise in enteroviruses, so thats good because that isnt an area i know much about. Im sure he will want certain tests run in that area.

 

[Sushi]

Thanks taniaaust1 for bringing up Rickettsia.

I think from the little I read on wikipedia, it sounds like this occurs in certain places, but it doesnt go into details on which places, so i dont know if its a problem in the UK or not.
Cigana, can I ask where in the world you are?

I'll have to ask KDM about it. As you point out taniaaust1 he seems to specialise in enteroviruses, so thats good because that isnt an area i know much about. Im sure he will want certain tests run in that area.

I think he usually tests for Rickettsia. I was tested but was negative.

I wouldn't really say he specializes in enteroviruses (isn't that more Dr. Chia?) though he is aware of their significance. He is likely to run tests on many body systems to get as complete a picture as he can.

Sushi

 

[snowathlete]

Your right Sushi, what I think I meant to say was the gut, but he has a pretty wide range of focus and experience really.
I saw a short video somewhere where he talks about his approach, tailored to each person but he described a logical and comprehensive methodology. I'll have to see if I can find it and post a link.

 

[SanDiego#1]

KDM found I had Rickettsia.

Your right Sushi, what I think I meant to say was the gut, but he has a pretty wide range of focus and experience really.
I saw a short video somewhere where he talks about his approach, tailored to each person but he described a logical and comprehensive methodology. I'll have to see if I can find it and post a link.

Cigana-
I too would like to know more about this.

SanDiego

 

[justy]

As far as i am aware Cigana is in the UK. Rickettsia is common in the uk.
My plan with Seeing KDM is to have as many of the tests he advises that i can afford - i wouldnt want to miss something important, especially after travelling all that way and spending all that money.

Am going to ring today or tommorrow for appt.

 

[justy]

This website is very interesting and helpful about the situationn in the UK

http://www.bada-uk.org/homesection/about/diseases/tick-bornerickettsioses.php

 

[Clodomir]

Hi,
if you want to know which test he does with redlab and the price:
Www.redlabs.com or www. Redlabs.be
there is a few request form

http://www.redlabs.com/documents/TRF02-06-09EN.pdf
http://www.redlabs.be/documents/Request Form 08-10IMMUen.pdf
http://www.redlabs.be/documents/Request Form 08-10STOOLenforMSA.pdf

And also some information

Have a good day

Clodomir

 

[snowathlete]

thansk for those links Clodomir, very handy. I had seen these in the past but then couldnt find them again. I had thought I had imagined them.

 

[Clodomir]

Your welcome.

But he also used other laboratories like : infectolab
Www.Infectolab.de
And "normal" belgian laboratories. For those laboratories, we 've being refunded ( as belgian people).

Do you have also an appointment with the nutritionist? Or you don't needed?

Hope your visit, will be positive for you.

Have a good day

Clodomir

 

[snowathlete]

Wish the UK NHS would refund me some of the tests but I'm sure they won't.

Not seeing the nutritionist as I don't have much in the way of stomach problems, intolerances.

 

[tim0011]

I'd recommend Infectolab laboratory from Germany for Lyme co-infections (Bartonella, Babesia, Mycoplasma etc.) They are pretty good but prices are very high. I paid 2200€ for whole Lyme panel + Co-infections. I was positive for Bartonella, both Bartonella quintana, and Bartonella henselae, which is not surprising since I have tons of neurological and cognitive problems (brain fog, glass in front of eyes, derealization, dizziness, disorientation).

Interesting, though, even though Infectolab is good lab for Lyme & Co's Lyme tests were negative. For Lyme alone probably the best lab is Lyme Diagnostic from Bucharest, Romania. I went there myself by plane and the tests there were positive for Lyme. They use Direct Microscopy (Dark Field Microscopy) which revealed Borrelias in my blood stream. They also use super wide antibody testing from EuroImmune, Germany which also revealed I'm positive for Borrelia afzelli and garinii.

 

[tim0011]

I'm just going to ask the question here rather than opening new thread. Does the doc also check genetics like MTHFR etc?

 

[SanDiego#1]

I'm just going to ask the question here rather than opening new thread. Does the doc also check genetics like MTHFR etc?

None of the Physicians with CFIDS here- that I have been to have ever mentioned most of these tests and I don't even know what they are.
I do know Lyme.The point is- is there any treatment for these other than Lyme? Most of the people I know that have Lyme-it never goes away.
SanDiego#1

 

[snowathlete]

From the little i know about Lyme it is relatively easy to get, difficult and unrealiable to test for and extremely difficul to get rid of.

Regarding other bacterias, viruses parasites etc, it depends on the specific one but many have treatments of various types, some being more effective than others. Some are fairly easy to treat i think, others like Lyme, more difficult!

 

[tim0011]

Actually Lyme is for many people easy fix. I personally know some people who had chronic/late stage Lyme for years and were cured with only one month of IV antibiotics. But of course on the other hand I know people who struggle years and years with antibiotics and they don't get better.

I believe that those people are missing something that they don't get better. It may very well be something in genes that their immune systems don't start turning the wheels.

 

[SanDiego#1]

Actually Lyme is for many people easy fix. I personally know some people who had chronic/late stage Lyme for years and were cured with only one month of IV antibiotics. But of course on the other hand I know people who struggle years and years with antibiotics and they don't get better.

I believe that those people are missing something that they don't get better. It may very well be something in genes that their immune systems don't start turning the wheels.

I think it depends on what Antibiotic they are on. Many can't take some of the ones rec.Particularly for a long period of time. Doxicyline is one.

Thanks for the info.

San Diego

 

[cigana]

Thanks taniaaust1 for bringing up Rickettsia.

I think from the little I read on wikipedia, it sounds like this occurs in certain places, but it doesnt go into details on which places, so i dont know if its a problem in the UK or not.
Cigana, can I ask where in the world you are?

I'll have to ask KDM about it. As you point out taniaaust1 he seems to specialise in enteroviruses, so thats good because that isnt an area i know much about. Im sure he will want certain tests run in that area.

Hi SnowA,
I am in London UK, not exactly famed for its zoonoses. It was a surprise to me too.

He has diagnosed me with Lyme.

 

[snowathlete]

Hi cigana, was Lyme a surprise to you or did you have reason to suspect it?