ME/CFS specialist in Germany?

[Wednesday's Child]

I already sent a reply but to another member by mistake. As I said I m ready to travel to germany, leave my kids and husband in Canada, if it is to have good diagnostic and good results. Am so sick of this!
What is now your feeling about the clinic you re going to? Any results? Do you stay there or just go for appointments?
Anything I need to know? I m also open to other doctors. Am afraid to do the trip and come back without results... What is the name of the doctor you re seeing?
How long is the process? ... As I will have to be in a hotel for a while... That might be quite a cost!
Thank you for you help!

Hi Nanou,

I know the feeling, of being so sick of it all. I'm 5 months in to treatment now. I said in the other thread that for a few years I was unable to work for more than 20 hours per week, but I would say that was a bit ambitious, 10 would be about right. I would say I was at 30-40pc functioning when I started treatment. I am now at 70pc. I have much more stamina, I stay awake all day for 5 days per week, my brain fog is gone, I go for walks for an hour per day, I'm sleeping through the night (not needing to get up to pee every two hours), no muscle pain, much less weakness. My resting heart rate has gone from 120 to 107, and my lung function has gone from 68 to 71. It's moving in the right direction, but slowly.

I recently got my test results after 4 months of treatment for leaky gut and mitochondrial dysfunction. Re mitos: my LDH levels are far better and show I am no longer in heart failure. My mitos are stronger and are no longer in a constant state of repair. My gut is still a little bit leaky, but is far better. Another 4-6 months on the supplements should fix my mitos and another year on the leaky gut stuff should fix them.

I am very happy with BODI, but I'm not sure if coming over would be the best thing...it's more like a normal doctor's office than a clinic, and I've only been there four times over the past 5 months. If you came over, you would need to stay for at least two weeks between the first appt and the results, and then more tests may be ordered...Have you emailed them through the contact form on the website? It may be better to get the following tests if you can, through Canadian labs if possible:

Available through Ralf Kirkamm's lab (ganzimmun.de)
Cholesterol
CoEnzyme Q10
CoQ10 in serum
Lactate in blood
Pyruvate in blood
Lactate-pyruvate ratio
ATP in granulocytes
ATP during blockade
ATP after blockade
Nitrophenylacetic acid (I think that's the right translation)
Citrulin in urine
Methylmalonic acid in urine

Available through MVZ Laborzentrum Ettlingen
LDH 1, 2, 3, 4 and 5
M2 pyruvatekinase in blood
Oxidated LDL cholesterol
IgA in stool
a1 antitrypsin in stool

Available through biovis Diagnostik
Histamine in stool

Full blood test
Vitamin D3 level

I also did the Imupro 100 test when I found I had leaky gut (www.imupro.de). The treatment for my malfunctions (mitos and leaky gut) was a range of products from www.tisso.de. As per the greetings from Germany thread:
Every day I take: 2mg Pro Basan in water
30ml Pro Emsan as a shot (I have never tasted anything so bad, and I've had wheatgrass juice)
10 capsules of Pro Dialvit 44, 5 before meals twice a day
Pro Sirtusan 2 per day
Neuromin one per day with breakfast, as mentioned above
Pro Sanatox two per day
Pro Curmin 2 per day

Please let me know if you would like any more info.

 

[Daffodil]

if you are in Germany, wouldn't the best option be to go to Belgium to see Dr. DeMeirleir?? he is 10 years ahead of the rest of the world when it comes to this disease!

 

[Wednesday's Child]

Daffodil, is that question addressed to me? If so, I'm extremely happy with how my CFS is being treated here in Munich and if you have a look at the BODI protocol, you'll see that it's very similar to what De Meirleir is advocating. I don't see how you would know that/if De Meirleir is ten years ahead of all of the other doctors in the world.

If your advice is for Nanou, it's possible that seeing De Meirleir would be better; going by the info available, De Meirleir routinely treats people from overseas while I don't know if BODI does.

 

[maryb]

Nanou - If you see KdM you certainly won't get your results and report for treatment back within a week or two. So you would be coming over and going back still not knowing anything.

 

[Daffodil]

yea it takes like 3.5 months to get a treatment protocol from demeirleir but i would still go to him. i know he is WAY ahead of everyone else. he published that HERV paper about CFS and autoimmunity and eventually i heard Lipkin's team was thinking the same thing. and he is many years in his personal research - way ahead of what he publishes. he has the best testing..his stool testing is more accurate than any other labs in the world. he has been using GcMAF the longest too, aside from maybe Cheney (not sure).

 

[Lala]

Wednesday´ child, you wrote you had depression as well. Did they test your neurotransmitters levels? If so, how much does it cost? I have suffered from depression whole my life, so I am very interested in it.

 

[Wednesday's Child]

Wednesday´ child, you wrote you had depression as well. Did they test your neurotransmitters levels? If so, how much does it cost? I have suffered from depression whole my life, so I am very interested in it.

Lala, there's no evidence that a deficit in any neurotransmitters is linked to depression.
I'm not sure what neurotransmitter tests you're talking about, but if it's a blood test it will be completely useless. Neurotransmitters don't cross the blood/brain barrier easily, and if you wished to measure the levels of neurotransmitters in your brain, you would need to take a sample of cerebrospinal fluid. Unfortunately, there is no evidence that people who have depression have differing levels of neurotransmitters to controls, and there's no evidence that taking SSRIs, MAOIs etc increases the amount of neurotransmitters in the CSF.

The monoamine hypothesis came about after monamine oxidase inhibitors (MAOIs) were accidentally found to be somewhat effective in treating depression. Working backward from what the MAOIs were known to do, the monoamine hypothesis was born.

Here's a link from people at San Diego State University who believe in a neurobiological basis for depression:
http://www.sci.sdsu.edu/classes/psychology/psy760/handouts/depression.htm
Having read the evidence to date, I believe that IF SSRIs work in some people, it is because they increase levels of BDNF and encourage neurogenesis.

This link may also be interesting:
http://www.psychologytoday.com/blog...the-serotonin-theory-depression-is-collapsing

I'm sorry to hear that you've suffered with depression for your entire life so far. I had depression for about 6-8 years, it's a dreadful disease to live with. I'm wondering, why do you think testing your neurotransmitter levels would be helpful for you?



Source of the above: I am a mental health professional and I took many psychiatry courses at university. Please PM me if you would like more details.

 

[Nanou]

Hi Nanou,

I know the feeling, of being so sick of it all. I'm 5 months in to treatment now. I said in the other thread that for a few years I was unable to work for more than 20 hours per week, but I would say that was a bit ambitious, 10 would be about right. I would say I was at 30-40pc functioning when I started treatment. I am now at 70pc. I have much more stamina, I stay awake all day for 5 days per week, my brain fog is gone, I go for walks for an hour per day, I'm sleeping through the night (not needing to get up to pee every two hours), no muscle pain, much less weakness. My resting heart rate has gone from 120 to 107, and my lung function has gone from 68 to 71. It's moving in the right direction, but slowly.

I recently got my test results after 4 months of treatment for leaky gut and mitochondrial dysfunction. Re mitos: my LDH levels are far better and show I am no longer in heart failure. My mitos are stronger and are no longer in a constant state of repair. My gut is still a little bit leaky, but is far better. Another 4-6 months on the supplements should fix my mitos and another year on the leaky gut stuff should fix them.

I am very happy with BODI, but I'm not sure if coming over would be the best thing...it's more like a normal doctor's office than a clinic, and I've only been there four times over the past 5 months. If you came over, you would need to stay for at least two weeks between the first appt and the results, and then more tests may be ordered...Have you emailed them through the contact form on the website? It may be better to get the following tests if you can, through Canadian labs if possible:

Available through Ralf Kirkamm's lab (ganzimmun.de)
Cholesterol
CoEnzyme Q10
CoQ10 in serum
Lactate in blood
Pyruvate in blood
Lactate-pyruvate ratio
ATP in granulocytes
ATP during blockade
ATP after blockade
Nitrophenylacetic acid (I think that's the right translation)
Citrulin in urine
Methylmalonic acid in urine

Available through MVZ Laborzentrum Ettlingen
LDH 1, 2, 3, 4 and 5
M2 pyruvatekinase in blood
Oxidated LDL cholesterol
IgA in stool
a1 antitrypsin in stool

Available through biovis Diagnostik
Histamine in stool

Full blood test
Vitamin D3 level

I also did the Imupro 100 test when I found I had leaky gut (www.imupro.de). The treatment for my malfunctions (mitos and leaky gut) was a range of products from www.tisso.de. As per the greetings from Germany thread:
Every day I take: 2mg Pro Basan in water
30ml Pro Emsan as a shot (I have never tasted anything so bad, and I've had wheatgrass juice)
10 capsules of Pro Dialvit 44, 5 before meals twice a day
Pro Sirtusan 2 per day
Neuromin one per day with breakfast, as mentioned above
Pro Sanatox two per day
Pro Curmin 2 per day

Please let me know if you would like any more info.

Thank you. How much approx did it cost you?

 

[Lala]

Lala, there's no evidence that a deficit in any neurotransmitters is linked to depression.
I'm not sure what neurotransmitter tests you're talking about, but if it's a blood test it will be completely useless. Neurotransmitters don't cross the blood/brain barrier easily, and if you wished to measure the levels of neurotransmitters in your brain, you would need to take a sample of cerebrospinal fluid. Unfortunately, there is no evidence that people who have depression have differing levels of neurotransmitters to controls, and there's no evidence that taking SSRIs, MAOIs etc increases the amount of neurotransmitters in the CSF.

The monoamine hypothesis came about after monamine oxidase inhibitors (MAOIs) were accidentally found to be somewhat effective in treating depression. Working backward from what the MAOIs were known to do, the monoamine hypothesis was born.

Here's a link from people at San Diego State University who believe in a neurobiological basis for depression:
http://www.sci.sdsu.edu/classes/psychology/psy760/handouts/depression.htm
Having read the evidence to date, I believe that IF SSRIs work in some people, it is because they increase levels of BDNF and encourage neurogenesis.

This link may also be interesting:
http://www.psychologytoday.com/blog...the-serotonin-theory-depression-is-collapsing

I'm sorry to hear that you've suffered with depression for your entire life so far. I had depression for about 6-8 years, it's a dreadful disease to live with. I'm wondering, why do you think testing your neurotransmitter levels would be helpful for you?



Source of the above: I am a mental health professional and I took many psychiatry courses at university. Please PM me if you would like more details.

This is from website you posted:
Stufe II
Die Diagnostik wird durch eine Neurostreß-Analyse und ein erweitertes Labor ergänzt. Damit lassen sich Störungen im Neurotransmitterhaushalt, eine Nebenniereninsuffizienz oder Belastungen mit Freien Radikalen und Nitrostreß erkennen.
So, I suppose they test neurotransmitters, I do not know which test they use. The most common is from urine.
I am not expert in psychiatry, but depression was associated with low levels of serotonin, dopamin and noradrenalin and that is how some of the supplements works. They are precursors of neurotransmitters like 5-HTP is for serotonin for example.

 

[Lala]

Btw: Interesting links, thank you.
I believe in my case depression was result of infected brain. Depression is simply less or more severe encephalitis.

 

[Wednesday's Child]

Nanou, all of those tests cost me €555.59.

Lala, yes, the most common neurotransmitter test is a urine test, but I would not consider it to be a useful test. It would be really wonderful if there was a valid, reliable test for depression. I disagree with what you've said about low levels of dopamine, serotonin and noradrenaline being associated with depression, but I don't want to argue, I can't imagine it being fruitful for anyone I agree that depression can be caused by many factors, including biological ones such as encephalitis. Recent research suggests that people with depression show increased inflammation throughout the body.

Best of luck with your recovery from both CFS and depression.

 

[Jo86]

Hey. I read the whole thread but I'd like to give it a reshuffle and see if anyone now 7 years later has any information to add.
Any good doctors to suggest in Germany ?