Dr. Horowitz on Chronic Lyme

[Helen]

http://chroniclymediseasesummit.com/richard-horowitz/

 

[duncan]

He knows his stuff.

I wonder what the name of his last book is. Or his new one. Or his website.

 

[medfeb]

One book is here
Why Can't I Get Better? Solving the Mystery of Lyme and Chronic Disease - http://www.amazon.com/gp/product/B00C74YQZC/ref=dp-kindle-redirect?ie=UTF8&btkr=1

 

[duncan]

Thank you, @medfeb.

If you listen close enough, you can pick up the names several times. He is very helpful that way.

 

[Antares in NYC]

What? Dr. Horowitz pushing his books and website?
You don't say! (clutching pearls)


The guy knows his stuff, but boy is he a persistent self-promoter. While this is something I don't personally like about him, I have to say it has gone a long way to inform the public about Lyme, TBDs and CFIDS.

The fact that his book has remained a NYT best seller for so long goes to show you that patients and relatives of those affected think precious little about the official CDC stance on Lyme. When extremely ill people are told "we can't do anything for you" with a shrug by their doctors, they'll find solutions somewhere else. The official Lyme guidelines have left a gap in care the size of the Hoover Dam.

PS: not to be sardonic, but that's the same dynamic that applied to the victims of the infamous Tuskegee experiments (carried out with your tax dollars and only terminated in the mid-70s). When these poor people where experimented upon with syphilis without their explicit knowledge and consent, and then were denied treatment by their Mengele-like doctors, most of them looked for alternative treatments out there (colloidal silver, etc) so they could function. Of course, these poor victims unknowingly infected their families as well.

(For the record, there were class action lawsuits and settlements for the survivors decades later, but not a single one of those criminal doctors saw a day in prison. Not one. If anything, they claimed they were experimenting on their fellow citizens "for the glory of science.")

 

[Dufresne]

I think Horowitz promotes his ideas out of compassion. He's treated about as many chronic Lyme patients as anyone and is convinced that the same complicating issues are being overlooked again and again; that many suffering patients are not doing as well as they could. I think he's right.

 

[JMS1958]

His book is very good if you go the long course of pharmacutical Antibiotics.
That being said I may do that route if my IGENX tests come back positive.
Another really great book is Stephen Buhners book Lymes disease published in 2005. He has a new one out with Coinfections, but I love the first book as it really get into herbal antibiotics and very in depth on how these 100 million year old bacteria attack our bodies and manipulate our immune systems to survive.

 

[Dufresne]

Here's a more recent talk, with some new information.

His work with Dapsone is particularly interesting to me as one infected with both borrelia and babesia. It seems to be a breakthrough therapy for some patients.

 

[sianrecovery]

thanks for posting the lecture, really useful

 

[Horizon]

I think I watched that seminar. Is this to sign up for a new one coming up?

 

[sarah darwins]

Here's a more recent talk, with some new information.

His work with Dapsone is particularly interesting to me as one infected with both borrelia and babesia. It seems to be a breakthrough therapy for some patients.

Great video.

Can anyone decipher what he says at 1:05:00 when he mentions a bacteria that "stops gluten sensitivity"? I've listened a few times but can't make out the name of the bacteria.

 

[valentinelynx]

Can anyone decipher what he says at 1:05:00 when he mentions a bacteria that "stops gluten sensitivity"? I've listened a few times but can't make out the name of the bacteria.

"Rothia bacteria"... Looked it up and found this intriguing paper in PLOS one:

Identification of Rothia Bacteria as Gluten-Degrading Natural Colonizers of the Upper Gastro-Intestinal Tract

• http://dx.doi.org/10.1371/journal.pone.0024455

 

[Helen]

Thanks @valentinelynx .

The Rothia bacteria, among others, is analyzed in the MSA stool test from REDlabs

Here is an example
http://media.wix.com/ugd/047c1b_63e41a96cdbc472b84df6784a04ac365.pdf

 

[sarah darwins]

"Rothia bacteria"... Looked it up and found this intriguing paper in PLOS one:

Ah, thanks. What good hearing you have!

This gets a bit confusing though. Redlabs, as linked by Helen, seem to think you don't want too much of the Rothia, with anything over that 0.2 threshold being red-flagged. But that PLOS 1 paper implies Rothia is helpful, at least for gluten digestion.

 

[valentinelynx]

What good hearing you have!

Maybe my computer has better speakers? I often have trouble understanding dialog in TV or movies. I always have to have the closed caption on (drives my hubby crazy). It's a difficulty with field independence, I think, that came with the illness... same thing that prevents good multi-tasking. Without closed captions I'm always stopping the show and saying "what did he say?" A fluke that I was able to get what Dr H was saying there, I think... Sorry, that was off topic.

 

[Dufresne]

This is part of an article taken from Cort's site.

Endothelial Functioning Substudy
Our substudy of endothelial function (Bergen Notodden) in 72 patients will use flow-mediated dilation to test large blood vessel endothelial functioning. We will also test microvascular endothelial function in Bergin using skin laser-doppler measurements.


Is a problem in the blood vessels triggering the sympathetic nervous system activation found in ME/CFS?

We believe that endothelial function is important in ME/CFS. Even though many symptoms can be ascribed to the central nervous system we are not convinced that ME/CFS is primarily a central nervous system disorder. We believe the sympathetic nervous activation seen in ME/CFS may be (partly) secondary to an underlying (peripheral) pathology.

It is important to get an understanding of which symptoms that are caused by the primary pathology, and those which may be ascribed to secondary (compensatory) mechanisms. We are working to elucidate whether endothelial dysfunction, and subsequent inadequate fine-tuned autoregulation of blood flow to meet the demands of tissues, may be an important feature of ME/CFS.

A study from Dundee in 2011 showed endothelial dysfunction to be present in ME/CFS. Our pilot studies in a group of ME/CFS patients suggest it is as well.

In the substudy to RituxME, we ask if we can reproduce the endothelial dysfunction in a larger cohort of ME/CFS patients? Is there a relation between endothelial dysfunction and disease severity? Is there a relation between endothelial function and a later clinical response (in the rituximab group)? In patients that improve after B-cell depletion therapy (Rituximab) is there a relation between improvement in self-reported symptoms or in physical activity levels, and changes in endothelial function?

We have written a manuscript on our thoughts and hypotheses including the relation between immune response, endothelial function, and the possible effector system for symptom maintenance in ME/CFS. However, we still believe that we need more data to underpin out thoughts and have therefore not submitted the paper yet.

[Dysfunction of the endothelial cells lining the blood vessels in the circulatory system has been a subject of interest in ME/CFS since MERUK’s pioneering efforts in the early 2,000’s. These cells – present everywhere from largest arteries to the small capillaries – control how dilated or narrowed the blood vessels are, affect inflammation, control blood clotting and more. Each of these factors have been implicated in ME/CFS at one time or the other. In 2012 Newton et al. reported both small and large blood vessel dysfunction was present in ME/CFS.

I just stumbled onto this upcoming Fluge and Mella study again and it set off a few bells for me. I believe this problem with vascular endothelial function factors massively into a number of my symptoms and I’ve good reason to suspect it’s my tick-borne infections that are behind it.

I've BP problems that are only helped with NRI's. Of course these drugs would be having their effect on endothelial cells in blood vessels. However, on the other side, when my vascular system becomes somewhat dilated I feel the greatest sense of calm, and my fasciculations even improve or altogether disappear. This is something I've also experienced while treating intracellular infections.

Horowitz claims at around 1:30:00 and 1:47:00 of this most recent video that most of his toughest to treat patients are seeing improvements with combinations including dapsone. These are patients who’ve tried just about everything else to no avail. Sound familiar? When I think of sicker and more difficult to treat Lyme patients I think of those who also meet an ME/CFS diagnosis.

If you watch from about 46:00 through 47:15 you’ll see Horowitz talks about his dapsone successes and his suspicion that the drug is working on intracellular borrelia in macrophages and endothelial cells, and how these cells are critical in controlling inflammation. Perhaps this relates to the Fluge and Mella findings about endothelial cells. Are those with chronic Lyme who are tougher to treat more prone to POTS? What about PEM? Just brainstorming. I’d love to hear any ideas.

 

[duncan]

Lyme has been shown to populate endothelial cells. I have POTS. I am also on dapsone.

I am just not at a position yet there is a connection. But the possibilities are fun.

 

[Dufresne]

Lyme has been shown to populate endothelial cells. I have POTS. I am also on dapsone.

I am just not at a position yet there is a connection. But the possibilities are fun.

My dapsone is on the way. Should be here in about a week.

Didn't you test positive for antibodies to babesia? I ask because I don't think I could have made any Lyme progress without getting my babesia load down. It's changed my Lyme treatment in a big way. Babesia is a very immuno-suppressant bug. And I didn't have the typical sweats or other signs of babesia. A shit load of anxiety? Yes.

 

[duncan]

Lots of anxiety, yes. I have not been treated for babesia yet as I only tested positive to antibodies, and the one time they looked for the parasite they didn't find it. Am being treated for bartonella and Lyme, as titers on both have actually risen in the past few years more often than they have declined. Believe it or not, my treating doc is not ILADS - he is strict IDSA, but he is hard-pressed to explain my TBD values and symptoms in any way other than active infections.

FYI, dapsone hasn't change anything yet. I just tossed down another 500 mg for my dessert.

 

[Dufresne]

500mg is a very big dose. How long have you been taking it? Which other antimicrobials are you taking?