Bedridden Recovery
- Thread starter LillyME
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Daffodil
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@LillyME yes, somehow both things...bacteria maybe from different sources interact....there is also autoimmune component. KDM has not published much of what he thinks yet so does not talk about it in great detail..but i can tell you he has been researching this for decades and is ahead of everyone else.
I had been tested for lyme many many times in the USA at all the best labs but it was always negative. KDM found it with the newer LTT ELISPOT test, which he says is better if you have had this a long time and are in a chronic state.
Yes, no one really understands why so many who are sick are not recognized. We do not look sick, our regular lab work is often normal, and we are basically invisible. Many still believe it is psychological, too ..these could be some of the reasons.
Before brain imaging was available, many people with MS were put in psych wards too!
Yes I have been sick a very long time....my whole life has been taken ...but I am better now.
I had been tested for lyme many many times in the USA at all the best labs but it was always negative. KDM found it with the newer LTT ELISPOT test, which he says is better if you have had this a long time and are in a chronic state.
Yes, no one really understands why so many who are sick are not recognized. We do not look sick, our regular lab work is often normal, and we are basically invisible. Many still believe it is psychological, too ..these could be some of the reasons.
Before brain imaging was available, many people with MS were put in psych wards too!
Yes I have been sick a very long time....my whole life has been taken ...but I am better now.
Waiting for the big breakthrough
http://www.ncf-net.org/forum/CallForResignation.htm
This sounds pretty much negative especially last note "yet he [De Meileir], feels a compulsion to lighten the wallets of patients with fairly useless drugs"
I don't know the backgrounds, just quick googled but is de Meileir isolated in the CFS/ME world from other researchers and doing its own thing???
http://www.ncf-net.org/forum/CallForResignation.htm
This sounds pretty much negative especially last note "yet he [De Meileir], feels a compulsion to lighten the wallets of patients with fairly useless drugs"
I don't know the backgrounds, just quick googled but is de Meileir isolated in the CFS/ME world from other researchers and doing its own thing???
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In my case I was bitten dozens of times, or hundreds, when I lived in the woods in southern Oklahoma. That was 20 years before the onset of ME symptoms. But I also had symptoms developing within a year or two of the bites. Stiff joints, no sweating, some rashes, skin problems, etc.
In my case, the Lyme diagnosis seems to have been accurate. In addition to the Lyme test itself, there are other tests which help support the diagnosis. But there is a fairly unique reaction to Lyme bacteria (or other spirochetes) being killed off, known as the "Jarish-Herxheimer reaction". This gave me fevers and hypotension on a daily basis while I was taking antibiotics which kill Lyme, and is a pretty good indication that I did indeed have a Lyme infection.
He is publishing a lot. Pubmed lists 98 citations under his name and you can also search for him on Google Scholar. He also has a lot of papers coming out in the next year or so. But he is primarily a clinician, not a researcher, and he's definitely one of the best ME clinicians in the world.
Daffodil
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@LillyME I can understand your skepticism and i cannot answer most of your questions about his practice....but I have spoken to hundreds of patients over the years and seen many specialists myself. I almost broke because of it. no one was able to help me but Prof. DeMeirleir. No one...and they tried hard.
and....Dr. DeMeirleir was the cheapest, by far, of any of the others.
That's all I can tell you.
and....Dr. DeMeirleir was the cheapest, by far, of any of the others.
That's all I can tell you.
Daffodil
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@LillyME ..another thing...you haven't been sick that long so your chances of recovery are excellent. Also you are in Germany so the testing and doctor's fees, which aren't high due to Belgian billing restrictions, may even be covered for you.
DeMeirleir does not use dangerous drugs such as Vistide or Rituxan either. Just stick to what he says to do and do not lose hope, even if/when you get worse on the treatment.
He is not the only doctor who is secretive. When I was seeing a very expensive doctor in NYC, I asked him to consult with another CFS specialist. He agreed but when he called that doctor, he was told he would have to sign a confidentiality agreement and lawyers would be present if he wanted to talk. lol. He did not talk to him
DeMeirleir does not use dangerous drugs such as Vistide or Rituxan either. Just stick to what he says to do and do not lose hope, even if/when you get worse on the treatment.
He is not the only doctor who is secretive. When I was seeing a very expensive doctor in NYC, I asked him to consult with another CFS specialist. He agreed but when he called that doctor, he was told he would have to sign a confidentiality agreement and lawyers would be present if he wanted to talk. lol. He did not talk to him
I will ask my insurance company. I don't think they cover. But they cover senseless tests in hospital for thousands of euros.
I think I have to go to hospital because my sick insurance will not accept that I just lay down month by month without tests in hospital. So I fear I have to do all the silly things.
DKM costs 60€ per hours something like that...in Germany a private doctor costs 120€ per hours.
The clinic in Belgium will send me a date via email. Somewhere in September.
I think I have to go to hospital because my sick insurance will not accept that I just lay down month by month without tests in hospital. So I fear I have to do all the silly things.
DKM costs 60€ per hours something like that...in Germany a private doctor costs 120€ per hours.
The clinic in Belgium will send me a date via email. Somewhere in September.
Daffodil
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@LillyME I have never even been bitten by a tick as far as I know, never lived in a Lyme endemic area in my life, didn't go camping or anything like that, and was a virgin when I got sick....yet my lyme LTT was positive...and I got sick after "mono". so who knows?
I have an appointment 21/22 of September.
But I don't know - I am only an ordinary person who thinks what ME could be - but I doubt that pathogens are responsible that this illness perpetuate. It might be a trigger as there are many many other triggers like permanent stress, operation, vaccination, virus, bacteria, accident, anesthesia, environmental factors like mould and toxins.
And these triggers do something with our system. The change it. They trigger something so that our body is accidentally damages itself and this can be the autonomic nerves system, metabolic system, immunsystem.
Okay I am not doing any research. The researchers will better know.
But I had three different triggers and 3 relapse. First onset of illness was stress, second was virus, thirds was bacteria.
Sometimes I think we have this illness right from the beginning and are a susceptible and the more trigger factors are on the body the more likely is that this systems crashes. And mostly the crashes happen over night.
What are intracellular bacteria doing that the system crashes over night???
I sometimes think that to focus to much on the pathogens itself might not be the right way. Better look at what might be altered in our body system in comparison to healthy people.
Right from the beginning I thought to myself this must be an autoimmune disease and Norway with rituximab is supporting this.
E.g in MS relapses are also triggered by infection as it is in Lupus. The bad thing with ME is that a relapse does not "heal" so quickly. In MS you recover in weeks or months fully or partially in the beginning when you have the relapsing and remitting MS.
And in MS the body destroys itself and it is so far unknown why am infection can trigger MS.
The LTT tests are scientifically controversial.
I don't know if Lyme must be the problem. We have so many viruses in our body which cannot be eradicated but the immunsystem keep them down. Are they really the reason why we are sick.
And why Lyme and not herpes virus? Why intracellular bacteria?
Ahhh I don't know anything...
But I don't know - I am only an ordinary person who thinks what ME could be - but I doubt that pathogens are responsible that this illness perpetuate. It might be a trigger as there are many many other triggers like permanent stress, operation, vaccination, virus, bacteria, accident, anesthesia, environmental factors like mould and toxins.
And these triggers do something with our system. The change it. They trigger something so that our body is accidentally damages itself and this can be the autonomic nerves system, metabolic system, immunsystem.
Okay I am not doing any research. The researchers will better know.
But I had three different triggers and 3 relapse. First onset of illness was stress, second was virus, thirds was bacteria.
Sometimes I think we have this illness right from the beginning and are a susceptible and the more trigger factors are on the body the more likely is that this systems crashes. And mostly the crashes happen over night.
What are intracellular bacteria doing that the system crashes over night???
I sometimes think that to focus to much on the pathogens itself might not be the right way. Better look at what might be altered in our body system in comparison to healthy people.
Right from the beginning I thought to myself this must be an autoimmune disease and Norway with rituximab is supporting this.
E.g in MS relapses are also triggered by infection as it is in Lupus. The bad thing with ME is that a relapse does not "heal" so quickly. In MS you recover in weeks or months fully or partially in the beginning when you have the relapsing and remitting MS.
And in MS the body destroys itself and it is so far unknown why am infection can trigger MS.
The LTT tests are scientifically controversial.
I don't know if Lyme must be the problem. We have so many viruses in our body which cannot be eradicated but the immunsystem keep them down. Are they really the reason why we are sick.
And why Lyme and not herpes virus? Why intracellular bacteria?
Ahhh I don't know anything...
There are different LTT tests. The one used by Armin labs is the LTT-Elispot. They've published their data showing that it is accurate.
Rlman
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Hey Timaca, which anitviral and antibiotics did you take? what symptoms did they help? what symptoms did elimination diet help? Thanks! Ron
Timaca
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Hi Ron~ Oh......I've been on a slew of antibiotics and antivirals. I was first put on IV rocephin in 2005 for probably Lyme disease. After 16 1/2 weeks I felt like I was back in the land of the living again. It was wonderful. The picc line was pulled at that time because it had a fungal infection in it. Three weeks later, all my symptoms came back! 
Eventually (after lots of other antibiotics that didn't seem as effective), I was put on Valcyte. After about 16 weeks on that I also felt substantially better. I'm now on Valtrex.
To read how diet has helped me, check out my blog. Scroll to the bottom of this page and read my entry about 2012. That is when I started the elimination diet. You can read the other posts too if interested.
I suspect the the chronic infections I've battled have set off some pretty serious food intolerances in me.....
Best,
Eventually (after lots of other antibiotics that didn't seem as effective), I was put on Valcyte. After about 16 weeks on that I also felt substantially better. I'm now on Valtrex.
To read how diet has helped me, check out my blog. Scroll to the bottom of this page and read my entry about 2012. That is when I started the elimination diet. You can read the other posts too if interested.
I suspect the the chronic infections I've battled have set off some pretty serious food intolerances in me.....
Best,