De Meirleir full cost?

[Folk]

hi folk. yes, there are some who cannot do IV and they do orals. I think some period of IV is better, that's all. Its never all IV...the majority of the treatment is oral.

how long it takes depends on age, duration of illness, amount of co-infections etc etc

I have been sick over 21 yrs, most very severely. I was told by the Reno lab that my inflammatory markers were one of the highest they had ever seen. KDM told me it would take about 4 yrs for me to feel significantly better (if i remember correctly). My neuro symptoms were especially severe.

Thx for you patience!

Hope you get better each day.

 

[Daffodil]

Thank you!

 

[Folk]

I can't contact Dr. De Meirleir in Nevada no matter how much i try.

I'm calling everyday and no one ever answers.... Does anyone one know about it?

 

[Sushi]

I can't contact Dr. De Meirleir in Nevada no matter how much i try.

I'm calling everyday and no one ever answers.... Does anyone one know about it?

He doesn't have any staff there when he is not there, though the general WPI office is usually staffed and have answered the phone when I have called. But they won't be able to help you with appointments or information about the clinic--the clinic is separate. For that you need to write to: Charlotte Francois <charlottef@ehmb.be>

Here is his schedule in Reno:

Appointments possible on:

Thursday, January 29th 10AM – 5.30PM

Friday, January 30th 9.30AM – 5.30PM

Saturday , January 31st 9.30 PM – 5.30PM

Sushi

 

[Folk]

Thanks @Sushi , I was able to contact through this e-mail.

But damn the consultation fee is much more expensive in Reno. They didn't talk about the tests though....
Is it also much more expensive than belgium?

Also, in the file they send me it say "one consultation every 30 minutes"? Is it really just 30 minutes? That's not much :/

 

[Sushi]

Thanks @Sushi , I was able to contact through this e-mail.

But damn the consultation fee is much more expensive in Reno. They didn't talk about the tests though....
Is it also much more expensive than belgium?

Also, in the file they send me it say "one consultation every 30 minutes"? Is it really just 30 minutes? That's not much :/

Yes, his fee in the US is much higher than in Belgium. The first consult in Belgium is about 85 euros. But the appointments in Reno are much longer. Depending on how many people are waiting, appointments are often longer than 30 minutes.

The tests would be the same at either location and the lab fees would be the same.
Sushi

 

[Folk]

Thx again @Sushi

Is there any tests worth doing before to bring it?

Like 23andMe stuff...

 

[Sushi]

Is there any tests worth doing before to bring it?
Like 23andMe stuff...

You should bring any recent tests you have done that seem relevant. He will order a CBC (complete blood count) so you could get that ahead of time. Most of what he will order will be specialty tests though.

I ask him to write a separate requisition for tests that I can get under my insurance, but in order for you to do that you would have to bring a blank test requisition from a lab in your country. I haven't heard of him ordering 23andME, though if you have it, bring it along. He has tested me for a few genes that are on it.

Sushi

 

[Folk]

Sorry to make a full questionare here with 10 thousand questions... But you know... it'll be a really expensive shot. And since I won't have all the money to cover it I asked my mother to help me out and now I have to prove some stuff.

But let me just ask one more thing

Is there any chance in the world Dr. De Meirleir is a quack? Or that he's putting patient health on risk with too experiemental stuff?

I don't mean to offend anyone and I'm so sorry if I do. Most of the time I feel he is as legit as a doctor can be. But there's some stuff that I just can't get my head arround.
I ask this because I read all the time, even on the forum, that:
1) There's not reliable test for Lyme, and he seems to use them with great belief;
2) There's no proof long term antibiotic do anything and can do harm, and everyone I talk that is his patient, is on antibiotics.

Also I've seen a video where Dr. De Meirleir states that he normally expect's that people over 50 have at least 50% improvement and people under 30 have at least 90% improvement. That's quite a lot and I'm 25 so I should be hopefull...
And I've read just one case (here on PR) of remission with his treatment (and I don't know what it was). And now you @Sushi having good results too.
I mean, does anyone get better with antibiotics for lyme? everyone seems to give up after a year of suffering.

Thanks for all the ansewrs. You guys have been so patient and kind.

 

[Valentijn]

Is there any chance in the world Dr. De Meirleir is a quack? Or that he's putting patient health on risk with too experiemental stuff?

He's a licensed MD in Belgium, and is specialized as a cardiologist. He's also a professor at the University in Brussels. I think his biggest flaw might be that he gets enthusiastic about specific avenues of research or treatment which don't pan out - but since he is also a researcher, I suppose that's pretty typical and not necessarily a bad thing.

1) There's not reliable test for Lyme, and he seems to use them with great belief;

Actually I think he would agree regarding the reliability. It's pretty well known to produce a lot of false negatives, which is why clinicians need to consider a broader clinical picture instead of strictly adhering to CDC testing protocols which were designed to only be applied to research.

Because false negatives are so rampant, other abnormal lab values are often considered by doctors in general to determine if there is a lyme infection. Basically Lyme is really really good at evading and manipulating the immune system - this is mainstream knowledge. So looking for typical immune reactions to that infection becomes difficult and alternative methods must be used.

Newer tests often come under fire for increasing the rate of false positives (people without Lyme who test positive) in the process of trying to reduce the rate of false negatives (people with Lyme who test negative). However the "Elispot LTT" seems to have improved considerable upon the false negative rate without increasing the false positive rates.

Only the lab offering the test has published regarding its accuracy so far, but the results are good. Hence the results haven't been replicated yet, but nor have they been disproven or even disputed. That paper is at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3474945/ - feel free to ask if you need help understanding the statistical aspects.

But the basic theory seems to be that the CDC tests are focused on one specific subtype of the bacteria which cause Lyme, which means that it can miss other subtypes, especially ones common in different parts of the US and other parts of the world. So those CDC tests might (arguably) be good at finding that one strain, but struggle or fail to detect any signs of other Lyme subtypes.

An additional consideration can be if the patient tests positive for common Lyme co-infections. If a certain pathogen is known to be transmitted by the same ticks which transmit Lyme, it can be prudent to treat for Lyme in the process of treating the co-infections. Since those treatments overlap to a large degree, and an incomplete treatment for Lyme might cause further problems, it usually makes sense to be somewhat aggressive in the treatment.

2) There's no proof long term antibiotic do anything and can do harm, and everyone I talk that is his patient, is on antibiotics.

I'd agree that there's not much research yet showing benefit of long-term antibiotics in Lyme treatment. However many patients do benefit from a more aggressive treatment than the standard one month course (at most) of doxycycline.

I'm one of those patients - nothing dramatic yet, but slow and steady improvement, albeit complicated by the Herxheimer reaction while I'm on the antibiotics. Brain fog is basically gone, and I haven't had proper PEM for a month or so, despite a lot of traveling (including 10 hour flights) for several weeks over the holidays. We also had great reports from most patients getting IV treatment at KDM's clinics, while chatting outside.

What harm are you concerned about regarding long-term antibiotics? The only risk I'm aware of specifically is antibiotic resistance, which is only a problem if doing off-again on-again sporadic treatment instead of bludgeoning the bacteria until they're all dead. Frankly, not treating long-term for Lyme would be the bigger risk - otherwise you end up taking short courses of antibiotics periodically for normal infections (sinus, lung, surgery, etc) which risks allowing the Lyme bacteria adapt and become even more difficult to treat.

Regarding GI problems, probiotics can help a lot with that. Most (all?) of us on antibiotics seem to be prescribed VSL#3, which has worked very well for me at least in preventing any diarrhea. At least one patient here couldn't tolerate oral antibiotics (and can't access IV) and had to stop, but it sounds like he got a bonafide diagnosis in his home country for the cause of GI problems which isn't related to the antibiotics, but still prevents him from taking the antibiotics. @snowathlete can correct me if I got any of that wrong

I mean, does anyone get better with antibiotics for lyme? everyone seems to give up after a year of suffering.

Yes, it sounds a lot of people do. But it's a pretty new treatment area for ME patients, and a somewhat lengthy treatment. So many are still in the process of treatment (which WILL kick your butt while it's ongoing, if you have Lyme), as a bunch of us ended up starting around the same time. And some are still struggling to get cooperation from their local doctors and home-care organizations, and others are struggling with bad reactions to pretty much every medication.

Regarding longer-term antibiotics and Lyme, the best place to get good info from patients would be a proper Lyme forum. There simply aren't enough of us here receiving that treatment.

Another complication is that ME is not Lyme. Lyme does not include PEM, and it's unclear whether Lyme treatment can fully resolve PEM. Do we become cured, go into remission, or just improve to the point where we can live a normal life as long as we don't try to run marathons?

And even in the case of Lyme, can there be permanent damage after years or decades of untreated infection? Has an autoimmunity been triggered for Lyme or ME patients, which will never go away even if all other symptoms resolve?

So my personal expectation/hope is for significant improvement. I want to be able to take care of myself again, and my house, and my garden. I'd like to get a lot more than that, but I think at least those basic expectations are reasonable, based upon what I've heard. And I've had Lyme for 20 years now and ME for 3 years. At age 25 and presumably with a shorter infection (if you have one), you should have a lot less damage and a much better chance at full recovery.

I should also add that not all ME patients have Lyme, and KDM does not diagnose it in all of his patients. Also something to keep in mind is that the research paper linked above has 3 as the minimum for a positive result, whereas the lab now uses 2 for a positive result. So that's decreasing false negatives at the cost of increasing false positives to some extent - but for a clinical diagnosis (versus a more stringent diagnosis criteria needed for research purposes) that makes sense.

 

[Folk]

I think his biggest flaw might be that he gets enthusiastic about specific avenues of research or treatment.

I really though it was the other way arround! hehe As I've seen him "dismissing" Rituximab and some other treatments. But happy to know it's this way.

Because false negatives are so rampant, other abnormal lab values are often considered by doctors in general to determine if there is a lyme infection. Basically Lyme is really really good at evading and manipulating the immune system - this is mainstream knowledge. So looking for typical immune reactions to that infection becomes difficult and alternative methods must be used.

Newer tests often come under fire for increasing the rate of false positives (people without Lyme who test positive) in the process of trying to reduce the rate of false negatives (people with Lyme who test negative). However the "Elispot LTT" seems to have improved considerable upon the false negative rate without increasing the false positive rates.

Only the lab offering the test has published regarding its accuracy so far, but the results are good. Hence the results haven't been replicated yet, but nor have they been disproven or even disputed. That paper is at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3474945/ - feel free to ask if you need help understanding the statistical aspects.

Gonna read that.

I'd agree that there's not much research yet showing benefit of long-term antibiotics in Lyme treatment. However many patients do benefit from a more aggressive treatment than the standard one month course (at most) of doxycycline.

I'm one of those patients - nothing dramatic yet, but slow and steady improvement, albeit complicated by the Herxheimer reaction while I'm on the antibiotics. Brain fog is basically gone, and I haven't had proper PEM for a month or so, despite a lot of traveling (including 10 hour flights) for several weeks over the holidays. We also had great reports from most patients getting IV treatment at KDM's clinics, while chatting outside.

When you say that I just think "Ok just give me the fucking drugs!"

What harm are you concerned about regarding long-term antibiotics? The only risk I'm aware of specifically is antibiotic resistance, which is only a problem if doing off-again on-again sporadic treatment instead of bludgeoning the bacteria until they're all dead. Frankly, not treating long-term for Lyme would be the bigger risk - otherwise you end up taking short courses of antibiotics periodically for normal infections (sinus, lung, surgery, etc) which risks allowing the Lyme bacteria adapt and become even more difficult to treat.

I'm concerned about 3 things.
First, what you said, becoming resistent to antibioitc.

Second, I'm already not feeling fine. The last thing I would need is to put more damaging medication on me. Making more damage... (if it's not for something good of course)

Third, I don't have a real diagnostic yet. All I got untill now is "looks like fibromyalgia" since my main problem was just pain for 8 years. Then four months ago I started having gut problems and strong stomach pain, after that everything just went downhill and I get worse everyday (pain, fatigue, brainfog and so it goes.). I changed from beeing normally constipated to having diarrhea everyday. So the point is, the gut seems to be my trigger problem and I'm afraid long term antibioitc would wreck it even more.

That beeing said, I actually took really strong antibioitcs (Azithromicin) this year and felt good, no Herx. But again was just for five days.

Regarding GI problems, probiotics can help a lot with that. Most (all?) of us on antibiotics seem to be prescribed VSL#3, which has worked very well for me at least in preventing any diarrhea.

Probiotics help me but doesn't prevent diarrhea for me :/
Unless is that some kind of better probiotics?

Yes, it sounds a lot of people do. But it's a pretty new treatment area for ME patients, and a somewhat lengthy treatment. So many are still in the process of treatment (which WILL kick your butt while it's ongoing, if you have Lyme), as a bunch of us ended up starting around the same time. And some are still struggling to get cooperation from their local doctors and home-care organizations, and others are struggling with bad reactions to pretty much every medication.

Yes I from Brazil. They refused to give me the TEST for Lyme, imagine the treatment? hehe



I would like to add that one of my concerns is that I really think it's improbable I have lyme, but then again, I don't know if anyone ever thought it was probable before getting a positive.
I say that considering my lifestyle (born and raised in the city, in an apartment. just ocasional contact with nature) and my symptoms (for 8 years what I had was basically pain, insonia and digestive issues, perhaps moods disorders but that's due to feel pain every day I guess... The neurological symptoms just began 2-3 months ago, after something bad happen on my gut, wich I don't know what it is. The pain in the joints just begun now too... plus there's no swelling, wich would be an indicative of lyme right?)

Well, I'm not disfunctional. I mean, I don't leave my house most of the time in this last 2-3 months but I could if I wanted... for some mild stuff, like going to dinner, or something like it. The point is in those last 8 years I've never had fatigue, I would go camping, would go to a lot of parties, and keep up with everybody even with lack of sleep. Also, after restless nights, just getting some sleep would make me feel a new person easily. The right type of exercise use to make me feel better normally too... even though I couldn't do much and used to have low treshhold for it, I would feel less pain after doing it (specially if it was something on the water).

Within that I have a doctor that is with me since the begining of 2014 and he advise me all the time to not go looking out for crazy treatments... and I can't lie, that stays on my mind. But he's not helping me much now.


Well...
Thank you so much @Valentijn for explaining everything so well.

Gotta admit I've read almost all your topic on De Meirleir too hehehe

 

[Sushi]

Or that he's putting patient health on risk with too experiemental stuff?

I'd say that, on the contrary, he is very careful about risks. He tailors treatment individually and takes individual risk factors very seriously.

really though it was the other way arround! hehe As I've seen him "dismissing" Rituximab and some other treatments. But happy to know it's this way.

He doesn't "dismiss" Rituximab, just is cautious about it for ME as it destroys all the B cells, which could leave you open to other infections. He is very interested in why it works when in does work, but more from the research angle.

Unless is that some kind of better probiotics?

VSL-3 is definitely a "better" probiotic--450 billion bacteria per serving!
Sushi

 

[snowathlete]

Regarding GI problems, probiotics can help a lot with that. Most (all?) of us on antibiotics seem to be prescribed VSL#3, which has worked very well for me at least in preventing any diarrhea. At least one patient here couldn't tolerate oral antibiotics (and can't access IV) and had to stop, but it sounds like he got a bonafide diagnosis in his home country for the cause of GI problems which isn't related to the antibiotics, but still prevents him from taking the antibiotics. @snowathlete can correct me if I got any of that wrong

Not quite. The antibiotics KDM prescribed me definitely were the cause of my ulcerative colits, a condition I now have alongside ME/CFS, and it causes me big problems. Otherwise I was tollerating the abx ok, though had no improvement on them after ten months seemingly in a herx.

The lesson here is that all drugs have risks, and one risk of abx is that you could get a serious problem like UC, or it could be something else. That's not to say you will get a serious problem, it seems the majority do not. But there is a genuine risk that you have to weigh up - it's a very real possibility. Of course, I now wish I had not done it, but that's hindsight; no doubt, if I had improved as some certainly do, it would have been a great decision. Given where I was, without the benefit of hindsight, I weighed things up and decided on balance that it was worth trying it. I don't know how common occurences like mine are under KDM, he sees a lot of patience, I doubt i am the only one, but how many? Not knowing is obviously a disadvantage to the situation, but I spoke with several of his patients before I started and none of them reported such an occurence.

btw, probiotics are certainly worth taking if you are on abx but they are limited in the benefit they provide, as they are not very representative of your overall gut flora.

 

[Folk]

@snowathlete and what KDM said about what happened to you and about what to do??

 

[snowathlete]

@snowathlete and what KDM said about what happened to you and about what to do??

When I first got symptoms he correctly thought I had UC and prescribed me mesalazine but instead I went and saw a gastro who also prescribed the same drug after a colonoscopy. But it continued to get worse while taking the abx and KDM wanted me to continue. I did, but after steroids also failed (which he agreed I should take as my UC was quite serious by that point), I then decided to stop the abx as it was the only thing I hadn't tried. I improved rapidly and immediately from that point. Although KDM isn't a gastro, really he should have known that abx can cause colitis and should have called a halt himself.
I got in remission but recently started having a flare again. I probably have to try a TNF-A inhibitor now to try and control the disease. So There can be serious repercussions.

 

[Folk]

@snowathlete Yeah.. I totally agree with you, he should've known. That's so bad.

I don't really understand how that goes.

I mean are you really supposed to keep herxing for a whole year? I just find that so strange...

Naive question: Why didn't they mention that on "under our skin"?