My trip to see Professor De Meirleir (long post)

[Sushi]

@justy

Yes, IV fluids usually help recovery from a big blood draw. On a first appointment they will take more vials cause they are in the process of looking for things to rule out too. I have also asked how many they were taking and the nurse said "about 20." They will tell you exactly if you really want to know, but they don't like to freak you out so are usually a bit vague!

On my last appointment they took far less.

Hope you are doing better now. And yes, it is hard to wait for results but you will have to. With KDM it is a longer wait for results, once you have seen him, than it is for your initial appointment. Partly because some of the labs tests require culturing, sequencing etc., and partly because he has to find the time (amidst clinical work, and travel related to it, to research and to advocacy) to analyze your results and work out a treatment plan.

Best,
Sushi

 

[peggy-sue]

If one vial contains 10mls of blood, even 25 tubes is still only 250mls of blood - about half a pint.
It's not a huge volume, more than that should be stored in the liver at any one time.

But, PWME are different, yes.

We do tend to have a low blood volume and care should be taken after removing even a small amount, particularly as we're probably under a whole load of extra stresses at the time it's being done, for all sorts of reasons.

 

[Insomniac]

...Then he talked about a new trial they were going to start in 3 months’ time with 3 drugs plus a placebo for bringing down brain inflammation. He was hopeful that one of these drugs would prove very useful for patients in the near future and he seemed excited about this...

Justy.

I hope something comes out of that trial. That gave me a bit of hope.
Thanks so much for writing

 

[justy]

@redrachel76 - yes I realised after I left his office that I should have asked him about possible inclusion perhaps? or at least a bit more about it as he seemed certain many of my symptoms were being caused by brain inflammation.

You always think of these things afterwards don't you? Also I hadn't reckoned on how much just the travelling would take it out of me - brain was not at its best when I was in there.

I really do hope something comes out of it also.

All the best
Justy

 

[justy]

Just got my Infectolab LTT Borrelia test results back - they say:

Borrelia burgdorferi Elispot LTT
Borrelia burgd. Fully Antigen 1 SI < 2
Borrelia OSP-Mix (OSPA/OSPC/DbpA) 1 SI < 2

Borrelia LFA-1 1 SI < 2
The results of the Elispot-Lymphocyte-Transformation-Tests are no indication for an
actual cellular activity against Borrelia burgdorferi.

So I guess that means I DONT have Lyme disease. Its not like I WANT to have Lyme disease, but im so scared that all my tests will find nothing - story of my life - am so afraid of this now...

 

[maryb]

@justy

You've got a lot of results to come yet, hopefully he's clever enough to know what they are pointing to. but I understand its the not knowing that is so unbearable.

Please think thank god it isn't Lyme... honestly you don't want that.
I'm in a similar boat, but my results are looking probably like Lyme,

 

[justy]

I guess you are right @maryb I don't really want Lyme - but I do want something treatable!

In a way I had convinced myself my symptoms all pointed to Lyme - so it feels a bit weird now, and yes of course that is only one of VERY many tests to come back.

The problem is if not Lyme then what - i'm still horribly ill and have been for many many years without knowing. I had told myself that if ALL results come back normal i'm going to go to a very good psychiatrist... only half joking with that one.

 

[Valentijn]

The problem is if not Lyme then what - i'm still horribly ill and have been for many many years without knowing. I had told myself that if ALL results come back normal i'm going to go to a very good psychiatrist... only half joking with that one.

You're very sick, and in ways which KDM is very good at finding clues of. Even if the tests for certain pathogens come up negative, there should be plenty of other results showing abnormal results and indicating a direction for additional testing.

If you do decide to go the psych route, you should do something practical in the process. If we can make our lymph nodes swell just with our thoughts, etc, I think we should also be able to use our remarkable mental powers to do something more useful. You know, additional limbs? Perfect boobies? Odorless farts? Something truly exceptional and impressive like that

 

[xchocoholic]

Great info. Thanks. I couldn't imagine a more thorough workup.
And all at one time.

I have bent fingers too but hazel eyes.

I thought my right side pain was from my kidney since it flared with my latest uti. This area was extremely inflamed when I had pyelonephritis. I had 2 stones in my bladder at the time. Ouch.

It's interesting that there's more to it.

Hope this leads to your recovery. tc .. x

 

[justy]

You're very sick, and in ways which KDM is very good at finding clues of. Even if the tests for certain pathogens come up negative, there should be plenty of other results showing abnormal results and indicating a direction for additional testing.

If you do decide to go the psych route, you should do something practical in the process. If we can make our lymph nodes swell just with our thoughts, etc, I think we should also be able to use our remarkable mental powers to do something more useful. You know, additional limbs? Perfect boobies? Odorless farts? Something truly exceptional and impressive like that

Well ive already GOT perfect boobies and i'm a lady so don't, ahem, you know, but an extra arm might be nice, or just and end to world hunger (can I THINK that into being?

Thanks for making me laugh and lightening the load - i'm studying for an exam on thrus, fri and sat this week and my brain is in proper melt down mode - my lymph nodes are also still swollen behind my neck and ears and they come up and go down according to how ill I am - Valntjin you are so clever how did you know?

 

[xchocoholic]

Hi @justy. Didn't you see Dr. Myhill ? If so, how do her tests compare with his ? Tx .. x

 

[justy]

Hi @justy. Didn't you see Dr. Myhill ? If so, how do her tests compare with his ? Tx .. x

I will send you a PM

 

[heapsreal]

I guess you are right @maryb I don't really want Lyme - but I do want something treatable!

In a way I had convinced myself my symptoms all pointed to Lyme - so it feels a bit weird now, and yes of course that is only one of VERY many tests to come back.

The problem is if not Lyme then what - i'm still horribly ill and have been for many many years without knowing. I had told myself that if ALL results come back normal i'm going to go to a very good psychiatrist... only half joking with that one.

Im not saying its psychological but a 'good' psychiatrist like dr goldstein might be willing to treat symptomatically more aggressive then the average doc. At the end of the day they are the kings of uppers and downers and they might be able to find ways to treat the neurological symptoms?????

Im sure there is a sub set of cfs/me people who might come under the hit and run theory where the initial infection has gone but left a trail of damage. in these people treating infections isnt going to help but treating inflammation could help and things like eg increasing dopamine etc?? may help with these things as well as increase energy and reducing pain. Thats just one things and there are many other things one could persue i guess.

Just keep plodding along, atleast now u have ruled out lyme and your a step closer to the next possible issue???

cheers!!!

 

[justy]

Does anyone know if this result is definitive that I don't have Lyme? he also ran Borrelia tets with other labs and in other ways as well as co infections and Cpn etc.

 

[Sushi]

Does anyone know if this result is definitive that I don't have Lyme? he also ran Borrelia tets with other labs and in other ways as well as co infections and Cpn etc.

I think it is supposed to be about 85% accurate. But if you have low lymphocytes it is less accurate. He will look at that aspect.

Sushi

 

[minkeygirl]

@heapsreal. What did you mean by eg increasing dopamine? I'm wondering if I"m one of those hit and run you refer to?

 

[heapsreal]

@heapsreal. What did you mean by eg increasing dopamine? I'm wondering if I"m one of those hit and run you refer to?

Just using dopamine as an example of something that could be low in many cfsers and fixing this could improve symptoms.

I guess with a possible hit and run type illness one could work at improving the different neurotransmitters to improve energy, sleep and pain, also the same with hormones etc. Another example could be minirin, a hormone that reduces urine out put could play an important part in treating orthostatic issues.

I guess im giving something else to aim at rather then infections and the immune system?? But this could also help those who have treated infection/immune issues with some improvement but are still too symptomatic.

 

[minkeygirl]

I see. Could you tell my sleep was crap last night lol?

I think that for me, my brain doesn't work in the normal way so drugs that may be good for someone to raise serotonin works in crazy ways on me.

That's why I have problems with meds. Or part of the problem.

Then there is the issue of knowing is it virus and infection eating my brain or inflammation left from a virus or infection.

Too bad we can't do a brain biopsy.

 

[Daffodil]

i think the brain problem is coming fro lactic acid. I could be wrong but I think this is what my specialist said, and he is the best on the planet

 

[heapsreal]

I see. Could you tell my sleep was crap last night lol?

I think that for me, my brain doesn't work in the normal way so drugs that may be good for someone to raise serotonin works in crazy ways on me.

That's why I have problems with meds. Or part of the problem.

Then there is the issue of knowing is it virus and infection eating my brain or inflammation left from a virus or infection.

Too bad we can't do a brain biopsy.

Most meds also probably arent direct enough and can effect other processes. for me ssri's over stimulate me but then i dont have that issue with 5htp which does help improve mood and is calming. Alot is trial and error.

Also have to look at things that can help reduce inflammation in the brain, lactic acid as daffodil has mentioned could be an issue for some, maybe nmda for others but there are a few substances that overlap and cause inflammation and give that itred wired feeling.

I have been reading info lately on modafinil which as neuroprotective effects, maybe through its actions on dopamine?? but there is work currently being done on MS and other neurological illnesses where modafinil is showing neuroprotective effects. Im sure there are other meds that could help. I think maybe we need to start searching other illnesses similar to ours like MS and see what they are using etc.