Dr Horowitz's take on SEID (Lyme Dr)

[anciendaze]

Many people get worse by the aproach of dr. the Meirleir. He don't use a control group and his aproach have never been test blinded. Also the Meirleir use an unapproved test for Lyme at this moment. So you cannot say at this point you have lyme, why treat it then with heavy antibiotic. It is dangerous.

This is a real problem, and needs to be addressed. Unfortunately, you can't rely on approved tests, which, as I've said above, have been demonstrated to fail in some cases where you can easily isolate spirochetes from synovial fluid or CSF. I am not advocating invasive diagnostic procedures for everyone who might have Lyme, the testing problem has only been addressed to the level of solving a political problem of "doing something". It is far past time to do something else.

Massive continuous dosing with a single antibiotic are also not a good solution, and this is what doctors with little understanding attempt. If you check on what doctors like Burrascano do, or did when he was practicing, you will find it is different. I have no experience with Dr. Meirleir, so I'll leave it to others to say what he actually does for treatment, and how he monitors progress.

 

[Valentijn]

Many people get worse by the aproach of dr. the Meirleir. He don't use a control group and his aproach have never been test blinded. Also the Meirleir use an unapproved test for Lyme at this moment. So you cannot say at this point you have lyme, why treat it then with heavy antibiotic. It is dangerous.

I've been improving significantly. And I don't believe clinicians are required to use control groups.

Who is the test supposed to be approved by? It has been verified by comparing results to samples known to be serologically positive or negative. So that's one good reason to treat, the other reason being that the treatment helps.

If you don't like the risk, don't take it.

 

[justy]

De Meirleir uses a similar treatment approach and testing as the Lyme clinic in Germany, Dr Horowitz in New York State, Dr Burrascano and most other ILADS Dr's. Are they all wrong? do you have direct experience of the Dr you are talking about?

 

[Gijs]

Yes. I don't know which test Horowitz and Burrascona use but the Meirleir test his patiënts in Augsburg they use the LTT test. This test is not valide in the general accepted medical community at this moment!

 

[anciendaze]

Yes. I don't know which test Horowitz and Burrascona use but the Meirleir test his patiënts in Augsburg they use the LTT test. This test is not valide in the general accepted medical community at this moment!

The test that is "validated" just barely works if done just right in clear cases, with a fairly high false negative rate, which is just fine with doctors who don't want to diagnose Lyme. If doctors are not aware that the rash is the result of a localized reaction, and that general seroconversion may be delayed by weeks, it can return a negative in classic Lyme cases where you can find actual spirochetes.

On the other hand, repeating the test three times, to get the rate of false negatives down, raises the chance of false positives to a level that can't be ignored.

The result is that many diagnostic decisions, in either direction, are based on preconceptions. We have patients on this forum who went years before diagnosis even though results from their original test did meet official criteria for a positive. The doctor interpreting the results misunderstood the results, assuming this was something simple like a litmus test.

This situation has persisted for an embarrassingly long time. To say I am not impressed by this particular example of "generally-accepted medical practice" is understatement.

 

[Sushi]

Yes. I don't know which test Horowitz and Burrascona use but the Meirleir test his patiënts in Augsburg they use the LTT test.

Dr. De Meirleir tested me with 4 differents tests, from different labs to try to get a clearer picture.

Sushi

 

[justy]

Yes, I can confirm I had more than one test, from more than one lab also.

 

[Gijs]

''The test that is "validated" just barely works if done just right in clear cases, with a fairly high false negative rate, which is just fine with doctors who don't want to diagnose Lyme''. If validated tests are not right how is it even possible to get a proper diagnose of chronic Lyme, it is paradoxaal. It is the same if you say soembody have HIV based on false tests and you take dangerous antiviral medicine.It sounds ridiculous. Only acute Lyme with Rash can be diagnosed propertly at this moment. Time will tell if these doctors are right. But everybody must know what they want to believe and if they want to use medicine for someting you may not have.

 

[Valentijn]

@Gijs - It has been well-established that the officially recommended tests very frequently say that people with a Lyme infection do not have Lyme. This is called "false negatives", because it is falsely giving a negative result. It is tested against samples which have been assessed with a sure-fire method which is too slow and expensive to use routinely for diagnosis.

The Elispot-LTT has been shown to have a false positive rate that is just as good as those official tests while drastically reducing the false negative rates. If you think the published research showing the sensitivity and specificity of the Elispot-LTT is incorrect, then perhaps you should conduct your own lab trials of that testing method and publish them.

 

[msf]

Most docs don't use a control group, it's unethical if you're not actually running a trial. As for the lack of trials of his treatments, most of the other ME docs have not published trials of treatments with a control group (Montoya and possibly Lerner being the exceptions I can immediately think of). Cheney, Peterson, Klimas, and many others have not done so.

 

[msf]

Oh, and the recent Norwegian review of ME cases found that 75% of KDM's patients reported improvement, which was much better than the GET/CBT results, etc.

 

[msf]

Giijs, you're basically taking the IDSA line - does that mean you don't think there are any contradictions in their approach?

 

[anciendaze]

...Only acute Lyme with Rash can be diagnosed propertly at this moment...

Sorry, maybe you didn't follow what I said, an acute case with a rash may not produce a positive serological test for weeks after the rash appears. The current claimed gold standard can fail even when dealing with acute Lyme disease with visible rash and spirochetes found by microscopy.

Of course, here in Florida I don't have to worry about that, almost any doctor will tell me the CDC tells them Lyme does not happen in Florida, and if I present with a visible rash it will be identified as STARI. This is despite CDC-confirmed cases now in the hundreds.

We'll worry about b. miyamotoi and relapsing fever at a later date, even though it is found is a fair percentage of wild turkeys.

 

[JT1024]

Like many here, I've been tested for Lyme using multiple testing methodologies at several different labs. What continues to amaze me is the diversity of results (B. bergdorferi on one yet B. hermsii on another).

With so many ill people, one has to wonder why better tests aren't developed and why the CDC would be make any statements on the epidemiology.

It reminds me of when the CDC said they had Ebola under control. With 30+ years in clinical laboratories/hospital settings, I KNEW they did't have anything under control.

MRSA and C. difficile isn't under control in many hospitals, nursing homes, and rehabs. What makes anyone think the CDC or any other government has Lyme under control??

IMHO, many researchers/clinicians have identified pieces to the neuroimmune illness/failure puzzle. The full picture ma take awhile to appear.

 

[minkeygirl]

Anyone notice how Vic shows up here and other threads, tosses out some theory he has decided is correct and goes against most of what we know to be true then disappears when anyone asks him how he came to his conclusions?

He did it here, on a lyme thread and a few
Other places.

 

[Antares in NYC]

With so many ill people, one has to wonder why better tests aren't developed and why the CDC would be make any statements on the epidemiology.

The attitude of the medical authorities in regards to Lyme has been the same as with ME/CFS: deny, deny, deny, and then ridicule long term patients.
Furthermore, they went as far as prosecuting in court and disbarring doctors that treated patients with chronic Lyme, all under the direction of a small cadre of very powerful and influential doctors with astounding conflicts of interests and collusions with the insurance corporations.

I wish some Lyme patients stopped telling ME/CFS patients that they have Lyme. I wish some ME/CFS patients stopped ridiculing Lyme patients. We have been equally screwed, denied, and vilified by the very same medical authorities. I truly wish people joined forces, frankly.

By the way, if anyone is interested in learning more about the horrors of Lyme and the deplorable practices of the medical system and the insurance companies, check out the film Under Our Skin, fully available in YouTube for free:

 

[heapsreal]

The attitude of the medical authorities in regards to Lyme has been the same as with ME/CFS: deny, deny, deny, and then ridicule long term patients.
Furthermore, they went as far as prosecuting in court and disbarring doctors that treated patients with chronic Lyme, all under the direction of a small cadre of very powerful and influential doctors with astounding conflicts of interests and collusions with the insurance corporations.

I wish some Lyme patients stopped telling ME/CFS patients that they have Lyme. I wish some ME/CFS patients stopped ridiculing Lyme patients. We have been equally screwed, denied, and vilified by the very same medical authorities. I truly wish people joined forces, frankly.

By the way, if anyone is interested in learning more about the horrors of Lyme and the deplorable practices of the medical system and the insurance companies, check out the film Under Our Skin, fully available in YouTube for free:

Yep agree, we are in the same corner and probably a big overlap with each other?

 

[Hanna]

Prof Perronne a well known infectious disease specialist in Garche's hospital (west Paris) has written an article about the problem of lyme disease testing. He tryes to educate his fellow MD's and politicians in France and Europe about what is becoming a serious medical threat.

No ILADS or IDSA here... just objective simple facts. And a huge unacceptable medical scandal.

http://journal.frontiersin.org/Journal/10.3389/fcimb.2014.00074/full

 

[Vic]

Anyone notice how Vic shows up here and other threads, tosses out some theory he has decided is correct and goes against most of what we know to be true then disappears when anyone asks him how he came to his conclusions?

He did it here, on a lyme thread and a few
Other places.

Because when I try to explain I usually get accused of diagnosing people, so end up just deleting what I write. Plus it's not so easily explained, and people with CFS are very hostile to any kind of causal suggestion that doesn't have to do with the immune, central nervous, or digestive systems. I'll be out with it once I finish putting together my theory and compiling all the evidence.

Sometimes the reason why I jump in in the first place is because I hear of people getting treatments that I know won't work, and will probably make them worse, like long-term antibiotic treatments (or even short-term), especially when you consider the opportunity cost. So I feel bad about not warning them. But the perspectives I get from reading what you guys write have been very helpful to me.

 

[Vic]

Prof Perronne a well known infectious disease specialist in Garche's hospital (west Paris) has written an article about the problem of lyme disease testing. He tryes to educate his fellow MD's and politicians in France and Europe about what is becoming a serious medical threat.

No ILADS or IDSA here... just objective simple facts. And a huge unacceptable medical scandal.

http://journal.frontiersin.org/Journal/10.3389/fcimb.2014.00074/full

The biggest question to me is what the rate of false-positives is. Many LLMDs are diagnosing the condition based on statistically improper use of the tests, like going strait to the Western Blot without doing the ELISA test first. If there is something else that is revving up the immune system, like we commonly see in CFS, the person may have antibodies to B. burgdorferi from a past infection, but only because the body is trying to protect from everything, just in case. I may have this wrong, but to my knowledge the ELISA tests to see if there are actual spirochetes, and the WB tests for the specific antibodies, which is why you need both. Just using WB has a high rate of false-positives. Doctors who diagnose for Lyme just based on clinical presentation are, frankly, idiots.

Plus I have a bunch of evidence that what causes CFS is the same thing that is causing Lyme symptoms, but I haven't compiled it yet.