Lyme conference Dr H. Dr B. etc - a must read

[JBB]

Tons of great info from this conference. The main speakers at the event were Wayne Anderson ND, Joe Burrascano MD, Ann Corson MD, Steven Harris MD, Richard Horowitz MD, and Byron White (herbalist) and it was summarized by thebetterhealthguy, here's the link...

EDIT: New link showing date of conference pre XMRV as pointed out by @heapsreal:
http://betterhealthguy.com/bioresource-2011-conference


Enjoy

JBB

 

[heapsreal]

Interesting.
Confused that they are mentioning xmrv, is some of the info pre xmrv retraction?

 

[JBB]

Yes me too @heapsreal, I just emailed and asked for a date to be added.

 

[valentinelynx]

Conference was March 19-20, 2011 in Burlingame, CA.

 

[Dufresne]

An awesome presentation by Horowitz from last May. To whoever it was that posted "he is a quack" in one of the other threads... Suck on this.

 

[Vic]

An awesome presentation by Horowitz from last May. To whoever it was that posted "he is a quack" in one of the other threads... Suck on this.

Hah, yeah that was me. Yes I've watched those, and yes he is a quack. He is kinda smart, sort of. The problem is he assumes there are all these co-infections related to different symptoms, but it's nonsense. He doesn't have any diligence in being objective and self-criticizing his work, and just ignores others' criticism. The key aspect of MSIDS that he claims is the largest hallmark of the disease, the traveling joint/burning/neuropathy and fluctuation, turning on and off of other symptoms like fatigue, IBS, whatever, are NOT caused by infections. They're how the body naturally re-expands connective tissue when the musculoskeletal system is collapsed and is destabilizing organs, circulation, nervous system, anything.

Chronic Lyme in general just reeks of bullshit. Only certain labs have the reliable tests (IGenex). You can never "cure" lyme disease in a chronic patient. All the symptoms are basically CFS, ME, Fibromyalgia, their common comorbidities and he tries to claim much of those are actually caused by Lyme. But chronic MSIDS is apparently uncurable, so WTF is the point?

Plus almost every person I've seen diagnosed with chronic lyme actually have the same type of cause as most/all with CFS/ME/FM. Working on piecing together the hypothesis/evidence.

There is a small chance that infections may play a part in the chronicity of symptoms, but I don't know how likely it is to be lyme and co, but what is clear to me is that you don't treat it with antibiotics.

 

[JBB]

Sorry @Vic maybe I misunderstood your post but it made me laugh..."Chronic Lyme...reeks of bullshit." Perhaps it would enlighten you to know that there is a "Chronic Lyme" test in the UK now. There ARE quite a few reliable specialist labs contrary to your belief...Fry for example.

No one is claiming to cure it. Just put it in remission which is very possible. Yes same cause as CFS / ME because they are probably often caused by a similar thing - chronic infection of one sort or another.

The problem is he assumes there are all these co-infections related to different symptoms, but it's nonsense."

Yes they are to some degree. You clearly know nothing about Lyme. This is pretty common knowledge about co's.

As an example my friend took a Byron White forumla to target Bartonella - result was jaw and foot pain - hallmark symptoms of Bartonelleosis. So are all Lyme patients just mad?

A SMALL CHANCE!?!?! Seriously you have no idea what Lyme disease is if you think it is not extremely serious. Let me tell you...I have done a lot of research, spoken to many Lymies / seen how treatments work to know this is a very serious disease and does respond to treatment. I have no idea how you came to your conclusions. Have you even read "Why Can't I Get Better"?

Please do not bash our best doctors for christ sake! Especially if you don't know about Lyme disease.

Best wishes,

JBB

 

[Vic]

@JBB Yeah Lyme is serious, but the idea of a chronic lyme infection and/or other infections being the primary cause of the lists of symptoms Horrowitz mentions is plain wrong. Working on explaining why. An acute Lyme infection can certainly cause lasting damage, but the idea that it resides in the body and continues to cause dysfunction is completely unsupported. I think the ONLY SMALL chance that this is the case is the possibility of bio-films, but they haven't actually proven their existence in relation to these lab tests yet. Which, admittedly could be difficult.

 

[JBB]

@Vic So I guess the National Health Service in the UK offering a Chronic Lyme test is based on completely unfounded evidence? They are pretty stingy over here so I'm sure they wouldn't throw money at something which is completely unfounded.

the idea that it resides in the body and continues to cause dysfunction is completely unsupported.

No. There is mountains of evidence and no I can't be bothered to find it.

Maybe you should join some Lyme groups and see for yourself.

 

[msf]

Hi VIc, I don't think your view that there is no such thing as chronic Lyme is shared by any serious doctors. If however, you believe, as the IDS seem to, that there is no such thing as chronic Lyme after a patient has been treated with 2-3 weeks of Doxy, then the only thing I can say is, really, it NEVER happens?

 

[Hanna]

One example if you wish Vic of docs supporting Chronic Lyme : in France, prof Perrone - chef department of infectious diseases in University Hospital of Garches (WestParis), and member of Pasteur institute. No Quack,but a very serious man devoted to alleviate his patients burden.
And he is not the only one...

 

[duncan]

@Vic, would you please define how you are using "chronic Lyme"? The definition can vary by country, so clarifying how you define it may help others understand you position.

 

[JBB]

I would like to add @Vic that I find your view very distressing and dangerous to people. I know people personally (and have met in person) who have had seizures, periods of unconsciousness, paralysis and are practically dieing of Lyme disease because of the ignorance of this disease. Indeed Lyme disease can kill and many many lives are lost due to ignorance.

If people with ME / CFS don't know the truth of Lyme disease then how can we ever hope to make progress. I seriously hope that you reconsider your opinions and do some research on Lyme groups. As for chronic infections there are many on this board who will testify that they are important I'm sure @Sushi @maryb @serg1942 @justy who are better known on PR than me will agree.

 

[Thinktank]

They're how the body naturally re-expands connective tissue when the musculoskeletal system is collapsed and is destabilizing organs, circulation, nervous system, anything.

Can you please support that with relevant studies?

 

[maryb]

Why are we bothering to have this 'conversation'??!! We all know it exists and the evidence is there from respected researchers and doctors, that's all that counts.

I know now I have chronic Lyme undiagnosed for 9yrs....dianosis of ME/CFS until then. History of outside work, dogs, horses, sheep, farming auctions etc. But I don't really blame my NHS doctors for that, I didn't have a EM rash that I can remember, but lots of bites and lumps, rashes in general that I wouldn't bother about at the time.

My symptoms include - Bells Palsy, inability to read books, magazines, newsapers fleetingly if I skim the page and only then on a good day. (I have a BSc & MA)
unable to focus visually on moving objects, feel like I'm going to have a seizure
constant head pressure, joint/back pain , vertigo, dizziness, MCS, heart issues, fatigue, food intolerances.
Those are just some of my symptoms. Many disappeared after a month on IV Rocephin, oh wait probably just a placebo effect. Why do these people bother, haven't they got something better to do, like annoy some other group, preferably of well people.

 

[heapsreal]

very interesting, Im starting to think the reason i have regular cmv reactivation is because of some type of bacterial infection such as lyme. I really seem to fit right into babesia with the sweat attacks, frontal sinus type headaches, they seem to be the babesia symptoms that stick out to me. I always feel better when on abx too, but herx on flagyl quite bad?

Thanks @Dufresne for the video link.

 

[Vic]

Okay I'm deleting everything I posted here because me being forthright sounds like me diagnosing, which is against forum rules. So... guess ya'll just have to wait.

 

[duncan]

Vic, I noticed you ignored my request to supply your definition of chronic Lyme.

Not all diseases end as acute cases that are cured with prompt treatment, or are self-limiting. Chronicity is a hazard with many bacteria, Lyme included. FYI, antibiotics can levy a positive effect in such cases, up and down the spectrum, from mild suppression of symptoms, to eradication. Degrees of success vary from case to case. Unfortunately, often the longer the bacteria has had to become entrenched, it seems the more difficult it is to treat even with a goal solely toward mitigating symptoms.

I would suggest reading up on Syphilis, another spirochete bacteria, before attempting to brush over the stages and issues presenting with arguably the most complex bacteria known to man.

 

[Vic]

Vic, I noticed you ignored my request to supply your definition of chronic Lyme.

Not all diseases end as acute cases that are cured with prompt treatment, or are self-limiting. Chronicity is a hazard with many bacteria, Lyme included. FYI, antibiotics can levy a positive effect in such cases, up and down the spectrum, from mild suppression of symptoms, to eradication. Degrees of success vary from case to case. Unfortunately, often the longer the bacteria has had to become entrenched, it seems the more difficult it is to treat even with a goal solely toward mitigating symptoms.

I would suggest reading up on Syphilis, another spirochete bacteria, before attempting to brush over the stages and issues presenting with arguably the most complex bacteria known to man.

Yeah, it's difficult for anyone to really define what "Chronic Lyme Disease" is. I am aware that an "acute" infection are recognized by the general medical community to occur, but they don't believe the infection persists to any large degree after the normal 2-4 week course of antibiotics. "LLMDs" believe B. borgderfori and other species of Borrelia can persist for months or years. They believe it can cause the extremely wide range of symptoms, from chronic fatigue to extreme pain to seizure-like activity to paralysis. Now LLMDs like Horrowitz are saying this range of symptoms is actually caused by a larger range of infectious organisms and perfers to call the syndrome MSIDS (multiple systemic infectious disease syndrome).


As for Syphilis, there's no real controversy over the diagnostic tests, and serological tests are still reliable for latent Syphilus bacteria. Plus you can actually biopsy it and see it under a microscope when it surfaces. According to this source, false-positives are only 1-2%.http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2095002/ From what I've seen of those diagnosed with Lyme, there is probably an extremely high rate of false-positives.

Basically, the idea that chronic MSIDS is causing the range of symptoms LLMDs are claiming is absurd and not supported by any kind of reasoning or real evidence. BECAUSE, in reality what "chronic Lyme" diagnosis is turning out to be is a waste-basket for a bunch of unexplained symptoms. The fault of the LLMDs is for being extremely trigger-happy and not critical enough with the diagnosis. My basis for thinking this is because I think I've identified the actual cause to the symptoms that LLMDs have not been paying attention to. You can call "bullshit" if you want, and fair enough as I haven't presented the evidence yet.

AT BEST, B. Borgderfori is like EBV, Q-fever, SARS, or whatever other viruses CFS researchers believe cause long-lasting symptoms, even though nothing has proven to be a persisting infection. But the name for that is Post Treatment Lyme Syndrome, or something like that.

Anyways, I guess it's useless for me to just talk about all this now without backing it up yet.

 

[duncan]

Vic, some notes on your observations in the order in which they were made:

a)The general medical community is not well informed about Bb;
b) You state repeatedly LLMDs "believe." It's not a function of what anyone might "believe." All individuals acquainted with Lyme know this to be true, even IDSA members; the issue is the degree to which it holds true post standard treatment, and for many, that is a contrived issue at best. The litmus test is in the patient;
c) The cause for Lyme symptoms is Borrelia. Look it up. It is not a matter of debate. Early Stage or Late Stage or even PTLDS - the cause is Borrelia;
d) Yep, I'd have to agree you need to back this stuff up with something, because right now you certainly aren't sticking to facts or even theory.