My Prof De Meirleir patient experience...

[aquariusgirl]

I think he was saying that nobody is sure what the fluctuations mean, what's driving the titers up and down.

I was referring to the Metamextrix DNA stool test. More sensitive than a standard CSA from say Doctors Data. KDM uses Diagnos Techs in Seattle, WA, I think.

HTH

 

[Tony]

Hi Sammy,

The doc is hopeful that the GcMAF will be available "soon". But they thought that 6 months ago too! I don't know what the hold up is...customs and perhaps other things probably. It's not for lack of trying on the doc's part.

 

[Sammy]

Hi Tony

Thanks mate. Im sure dr L is doing his very best. Just keep our fingers crossed i guess then

sorry for the late reply mate, having a hard time mustering up the energy to get on-line, its getting worse and it is scaring me a little. Oh Btw you have a PM

 

[CAcfs]

Found this thread because I was searching "fructose malabsorption," and Tony mentions it in the first post. I am looking into that for myself. Also noticed that the doctor's website in the second post mentions it.

Tony, do you still stick to the diet for that? I read many people with FrucMal have the messed up sleep/wake cycle because of inability to absorb tryptophan in the gut. Do/did you have that symptom, and is it any better?

Another question about the HCL Betaine (spelling?). Did you get a test before taking that? I am wondering if trying the HCL on my own could hurt me if I am one of the few that has too much acid in the stomach, as opposed to not enough. I actually did have a test done at a naturopathic clinic, and they told me I was one of the few with too much acid, but I almost don't believe it, and want to try the HCL regardless, because I have TONS of malabsorption symptoms. Just wondering how you decided to start taking it, briefly. Thanks. I do seem to have heartburn and don't want to damage myself more.

One last question....sorry! On these FrucMal diets, do they allow plain coffee or tea? What I have read says yes, but wondering what your doctor/nutritionist says (I am far from Australia, so can't see him!). Also wondering if they allow nuts? I noticed beans are out in the beginning. Thanks!

The reason I am looking into digestion and malabsorption now is that my hair has suddenly (in last 6 months, as opposed to years and years of CFS) become REALLY fine (baby-like) in texture, but not necessarily brittle or dry, and very tangly, and it is thinning all over, and I'm still in my 20's age-wise, female. We are ruling out Endocrine causes, basically have ruled them out for now, so other than Endocrine, I'm thinking the baby-fine hair has got to be malabsorption in the gut. Almost like starvation from proper nutrients, like iron, B12, etc. I can't fathom it would be anything else (the only other suggestion was stress/depression, but it is such a drastic change that I am thinking this hair issue HAS to be physiological). Any thoughts are welcome!

Also, in addition to the hair changes, I have had pain in the cecum area, just as that doctor describes on his website (I think he said 2 cm to the right and 2 cm down from the navel)!!!! I have been describing it to doctors for months, and everyone seems puzzled by it. So I'm thinking this is a GI issue, for sure. Now I just need to figure out what to do about it. So I'm gonna try the FrucMal diet on my own, in addition to gluten/dairy free, and considering taking HCL.

 

[Tony]

Hi CAcfs,

Yes, I still stick to the frucmal diet. Wheat seems to be the main culprit for me so I eat it only a little, very occasionally. I noticed a change in my overall health almost immediately upon eliminating the daily wheat. Less waking brain fog and a bit more energy. It's one piece of the puzzle for me...

I started a thread on frucmal here with links to some good studies and info: http://forums.phoenixrising.me/showthread.php?8056-Is-fructose-a-problem
I'd ignore most of what fejal says there...up the garden path comments...

My sleeping only became worse after I was ill for several years so I think there is more to it than the fructose problem in my case. Perhaps something went awry over time?...

I take the Betaine HCL on my doc's advice, the idea being that I don't absorb protein very well and have lost weight. I didn't have a specific test for this. My overall gut feels much better nowadays and has for quite some time. I'm still underweight though... I've turned to "Branch Chain Amino Acids" to see if they help. The pea protein powder didn't work for me and according to some research by Prof Tim Roberts and others it could be a catabolic state I'm in so the BCAA's may work...we'll see...

Coffee and tea are fine as regards this low fructose diet but I gave up coffee pretty much as soon as I became ill. It's probably the milk and caffeine my gut doesn't appreciate. I drink lots of water each day too...1.5 to 2 litres.

I haven't looked at the studies for a while but from memory it's only green beans that contain fructan and nuts are OK.

Good luck with the new diet and I hope it helps...

 

[CAcfs]

Thanks, that helped a lot! Best of luck.

 

[Plum]

I know nobody's written on this thread for ages. Apologies for adding a question. But does anyone know how much an initial consultation and batch of tests with Prof Meirleir is? Also how much are treatments etc.?

Thanks

 

[snowathlete]

I know nobody's written on this thread for ages. Apologies for adding a question. But does anyone know how much an initial consultation and batch of tests with Prof Meirleir is? Also how much are treatments etc.?

Thanks

Hi Plum,

I haven't been yet, but am booked in for January.
I have some inital blurb though.
Here is the overview of costs they sent me:

First consultation 80 €
Second consultation 60 €
Breath test Lactose 90 €
Breath test Fructose 90 €
Food allergy test 160 €
Electrocardiogram + effort test 125 €
Echocardiogram 60 €
Blood tests ± 2000 €

You can refuse any tests you dont want (i very much doubt i will have the exercise test) and I expect the cost varies considerably bet. different patients depending on what tests you have had already (if any), what your history is and how much you're willing to spend.

Hope that helps.

 

[Sushi]

Hi Plum,

I haven't been yet, but am booked in for January.
I have some inital blurb though.
Here is the overview of costs they sent me:

First consultation 80 €
Second consultation 60 €
Breath test Lactose 90 €
Breath test Fructose 90 €
Food allergy test 160 €
Electrocardiogram + effort test 125 €
Echocardiogram 60 €
Blood tests ± 2000 €

You can refuse any tests you dont want (i very much doubt i will have the exercise test) and I expect the cost varies considerably bet. different patients depending on what tests you have had already (if any), what your history is and how much you're willing to spend.

Hope that helps.

I don't know of anyone who has taken the effort and Electrocardiogram test or that he has recommended these for. I skipped the two breath tests mainly because you have to fast, I had come from the US and was jet-lagged and you have your consultation in the middle of the breath test, and I needed caffeine!

That is probably about average for the cost of blood tests, but, as Snow said, you can decline tests that you might have taken before or that you feel you can't afford. The nurse can help you prioritize the tests. These tests are important in order to see what abnormalities are there and need treating.

Sushi

 

[Plum]

Thanks for the replies. Apart from the tests, he seems very reasonably priced. I can imagine with all the tests he wants to get done for you that the price mounts up but it does actually sound very reasonable. Do you know how long a consultation is with him?

 

[atoska]

Hello Plum!
I went to see KDM for the first time last week. It was a good experience and I came out of his office with a good feeling.
He asked for a bunch of things, I think that all together I will spend like 2500 Euros more or less (without counting the trip, hotel and all those things).
He looked at all the tests I already had done over the years and didn't ask for many things that had already been looked at.
If you like, I can send you a list of all the things he asked for me. He asks for different things depending on who you are.. but if you like, you can maybe make an estimate of how much you will spend. He uses different labs, but Red Labs in Belgium is the main one.
I took the breath tests and I will take the effort test on my next visit in February.
I totally understand that Susy decided not to take the breath tests. I was sooo tired, soo hungry, my appointment with him could have been much better if I had had a cup of coffee before seeing him.
His consultation is not very long. I was there for like half an hour, and I think it is a long consultation for him.
But I think he is a good doctor
Andrea

 

[justy]

Thats a big help, to get a cost breakdown like that - thanks snow, and let us know how your visit goes. I have nearly £1000 saved so far for my tests when i book to go (hopefully in the spring)

 

[taniaaust1]

I see someone has written that he gets patients to do Lactose breath testing. Im curious if doing that by breath test is more accurate then the standard blood test for lactose intollerencez? (where they make you drink a solution then test your blood).

 

[tim0011]

Do you know if the doctor is also knowledgeable and is treating Kryptopyrroluria, MTHFR and other genetic defects?

 

[Clodomir]

Thanks for the replies. Apart from the tests, he seems very reasonably priced. I can imagine with all the tests he wants to get done for you that the price mounts up but it does actually sound very reasonable. Do you know how long a consultation is with him?

Hello,

If you want to prepare your visit and have some knowledge about tests prices: go to
http://www.redlabs.com/documents/TRF02-06-09EN.pdf
http://www.redlabs.be/documents/Request Form 08-10IMMUen.pdf

Lots of KDM the tests are made by redlab.
Next to each test, there is the price.


Have a good day

Clodomir

 

[Clodomir]

One last question....sorry! On these FrucMal diets, do they allow plain coffee or tea? What I have read says yes, but wondering what your doctor/nutritionist says (I am far from Australia, so can't see him!). Also wondering if they allow nuts? I noticed beans are out in the beginning. Thanks!

Hello CAcfs,

I have also FRucMal... My doctor is KDM and his dietetician said to me to "forget" coffee or tea... For me coffee was a problem, but tea yes, so she recommend tea without "caffeine". It exist!

frucMal diet are hard to follow, but in my case it is complicated with a permanent gastritis.
So when KDM allowed me to eat "normally" , well, I couldn't, because my gastritis ... And it is borring... Eating nearly every day the same things, with no pepper, onions, garlic, spices, etc...

Sometimes, once a month, I make an "extra": eating something I want, but, ... Everything has a price...

Have a good day

Clodomir

 

[Rolo]

Hi Clodomir,

My experience is that my gastritis is related to fats. When I leave all fats out of my diet, my gastritis disappears within 3 days. Leaving out for me means: Leaving all out (near 100%), so no meat, fish, nuts, avocado's, etc or anything else that contains fat.

Especially certain cheese worsen my gastritis. I'm craving cheese! Most spices don't!, actually I have the feeling that some are improving digestion. I've also stopped taking any 'acid inhibitors' They make it all worse on the long run.

I've also noticed that some typical CFS symptoms are improving on a total fat free diet. The first days after I reintroduce fats I generally feel quit good, but this doesn't last long. Soon symptoms get worsen again. I suppose it has something to do with inflammation of the gut (+stomach)

I also tried the opposite: a 100 % free carbohydrate diet and eating primarily fats. Soon a lot of symptoms improves (especially brain fog). I felt really terrible from the moment I started back with eating carbohydrates.

I'm still in a quest understanding this all. So far I have the feeling that the combination of fats and carbohydrates in the gut increases inflammation. (at least in mine) . Fats create inflammation, carbohydrate triggering the typical CFS symptoms?

Despite all my efforts over the last 15 years, I didn't found a diet that really worked for me

Best Regards (from Antwerp),
Rolo

PS:
- I also tested positive on the fructose test (H2 test)
- I encourage nobody to try out these extreme diets that I have mentioned!!

 

[Clodomir]

Hi Rolo,

I think my gastritis is also related to fats, but I am only 49 kg for 157 cm... A year before, I was 44 kg... losing weight. So now that sugar/fructose is forbidden, I need to eat something to gain or maintain my actually weight... In henry, I have no problems with gluten, but when I eat some pasta or bread, I feel horrible (gut problems)...
I eat lots of meat (fat meat), avocado's, crisp, french fries ... but I have no other choice... I prefer to have gastritis than pain, be more foggy, or have gut problems...
I try to eat lots of rice, "witloof", cucumber, courgette to absorb fat...
The only "acid inhibitor", I take is riopan just before going to bed. No IPP because, it doesn't work...
If you have advice about food with some energy, but no side effects..., you're welcome ...

Have a nice day,

Clodomir (from Brussel)

 

[Rolo]

Hi Clodomir,

The food in your diet are the things that I'm typically craving for. It's a diet that I can't keep up for long. When I eat fats, especially in combination with carbohydrates, I have to deal with some terrible symptoms, especially at night. Things like: extreme night sweats, palpitations, restless legs, frequently urinating, bad dreams, all kind of pains, extreme reflux, etc. All preventing me from sleeping. Even high doses of Pantomed (Pantoprazol) don't work any more for me. The biggest problem is that after a while a get more and more episodes of "binge" eating!

I know there is a general consensus that carbohydrates are the eval ones. My experience is that fats or carbohydrates themselves are not the problem, but combinations of fats and carbohydrates are. I'm able to handle carbohydrate (even wheat) much better if I leave out all fats for a few days. This is not the same then 'not combining fats and carbs in the same meal'! My believe is that fats are creating an ill environment (inflammation), but carbohydrates are mainly responsible for the symptoms.

This is based on the following trials:
Fat only diet,then adding carbs --> result: terrible reaction.
Only carbs for a while, then adding fats again --> result: good feeling, shortly (2,3 days)

The only advice about food I can give is to listen to your body and not so much what others are telling (yes even me! or mrs Christine Tobback), or what diets are telling. Use them only as an inspiration. It is different for everybody, because every gut is different

Of course if you have fructose malabsorption (like myself) then you have to avoid fructose.

I also use a technique that I'm calling "extreme chewing". = taking a small bite and chew it for at least 1 minute, while using as much saliva as possible. It will predigest the carbohydrates. It will also cost a lot of time and energy to finish a meal! ;-)

I also write everything down in journal. Everything I eat, I do and what medication I take, together with the symptoms.

Already ,a lot has been said about food and diets but there are still a lot of things to be cleared out.


Good luck, Bye,
Rolo

 

[Clodomir]

Thanks Rolo

My main problem is that I eat my meal in 5 min time.... Because I am so exhausted, sitting with my family, earing them talking about what they have done during the day ( quietly). I am so tired... So I jump on my meal, and before they say " bon appetit", it is already finish... I know that I have to do something about that.
I will try next week

Clodomir