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Thoughts on "Beating Lyme"?

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Posted 10/12/2011 11:53 PM (GMT 0)
I'm almost done reading the book "Beating Lyme" and I've found it pretty informative, although it doesn't really address detoxing which is the aspect I'm most curious about right now.

Just wondering if anyone has read this an has any opinions on it. I know Lyme is so controversial and, honestly, both sides of the debate have valid arguments. Just today my own sister said, "well maybe it's not Lyme..." ...and of course there's know way to know for sure. Sometimes I wonder if her undifferentiated connective tissue disorder (her doctor refers to it as pre-lupus) is really Lyme. A friend of mine just started down the slippery slope of IBS followed by fibromyalgia which sounds all too familiar and part of me wants to run to her screaming GET TESTED FOR LYME!! ...but getting tested doesn't mean much. My sister said she tested negative and that's all she needs to believe she doesn't have it.

I guess this post wasn't as much about the book as it was the questions it raises. How do you know it is or isnt Lyme without adequate testing? How do you know if Lyme is causing autoimmune, digestive, and hormonal problems or if, maybe, they're causing our susceptibility to chronic Lyme whereas others are cured right away? Very chicken versus egg. If I didn't have Lyme, I would find it incredibly fascinating.
Posted 10/13/2011 12:05 AM (GMT 0)
I wonder all the time too about other people battling "mystery" illnesses. The woman across the street from me had rheumatoid arthritis really bad and she was an avid gardener. The woman around the block from me is battling something but they can' find out what it is. Two blocks over a woman has MS. A dear friend has MS (her house backs up to the woods) and a friend's husband has MS. I find it hard to not believe some of these people could have lyme.

The hardest part is getting people to believe you when you tell them that lyme testing is unreliable. Who would believe that there is not an accurate test for a disease in this day and age? Most of the above people were tested for lyme and told they do not have it by doctors and who to believe but their dr. or me?
Posted 10/13/2011 7:57 AM (GMT 0)
Miss Cranberry said...

it is just that they don't know what to do about it and that there has been no scientific testing to indicate that long term antibiotics actually help. 

 

That's just a copout on their part. There's hundreds of published research trials, case studies and articles that demonstrate that long term antibiotics can eliminate some or all symptoms associated with chronic Lyme.

They simply don't bother to read the literature and instead get the cliff notes version from the IDSA, which cherry picks only studies that back up their position even though they are in the minority. The overwhelming majority of published data demonstrates exactly the opposite conclusion.

 

Posted 10/13/2011 12:38 PM (GMT 0)
Hi Miss C.

If you get a copy of the book 'Cure Unknown'.....you'll be able to read in detail about all the studies that have been done from the 70's up to 2008 when the book was published.

The writer covers flawed studies, promising studies, un-biased, biased........the full spectrum as put forth by both camps as well as those done by independents who simply study the bacteria itself-- not Lyme patients.

All the study authors and scientists are of course mentioned by name in the book. You can then google them for further info. It's all there.

*I have no vested interest in this book.
Posted 10/13/2011 2:18 PM (GMT 0)
Miss Cranberry,

I started Zithro with Rifampin about 4 weeks ago. I am not sure which med is causing it, but the first few weeks, it kicked my butt. I had brain fog so bad that I would go to work and literally sit and stare. I could not concentrate to save my life. I could not write...my hand was shaking so bad it looked like I was trying to write left handed. I had all kinds of symptom flairs and things new popped up that I hadn't had before. Just the other day I was in the shower and my entire head felt numb. Now, four weeks later, the brain fog is lifting somewhat but I'm still having new issues popping up like this pain that I'm having in my left hand right now as I type. Hang in there, it gets better.
Posted 10/13/2011 5:01 PM (GMT 0)
Miss C:

I would personally believe almost nothing told to me by a doctor who once told me that my symptoms are psychological, unless that doctor was willing to apologize profusely for being not just stunningly wrong, but also a complete ^&%$@!

First she blamed you, now she's blaming the disease, the supposed lack of published studies, the antibiotics.... Basically, she can't admit that she doesn't know how to help you, so she has to find a scapegoat to blame for her lack of omnipotence.

When I was working, I worked with MDs and psychiatrists every day, so honestly I have a fairly low opinion of them, but wow, I an so angry reading about yours!
Posted 10/13/2011 5:58 PM (GMT 0)

 If you want lists and summaries of studies that directly contradicts the assumptions that make up the establishment position you can find them here.

http://www.lymeinfo.net/lymefiles.html

 

You can find quite a bit of summarized data on the ILADS website in the form of position papers and treatment guidelines. Everything is cited and sourced if you want to do further investigation.

 

Miss Cranberry said...

Can someone please give the names of studies so that we can bring them to our non-lyme doctors? I keep hearing about studies but they have mainly been studies of patients "feeling better"... My LLMD did an informal study and if people felt 20% better after three years of antibiotics they were included in the high percentage of "feeling better after antibiotics" - statistics - which is misleading. Also there is NO accounting for all the people who stop treatment and never come back as well.

I know you're not trying to be contradictory and are only repeating the concerns of your doctors. I wanted to quote this because each of thes concerns (insensitive assesment criteria, accounting for dropouts) are also terrible the studies the IDSA is using to establish their position. 

Long term antibiotics are considered ineffective by the medical establishment largely due to the Klempner study. You can find dozens of critiques of this work, but included in its many flaws are the fact that the assesments of patient improvement started with a rudimentary written survey, then get summarized by the study authors three separate times until they are boiled down into stupidly simple Better, Worse, Same. The authors of the study don't even show their work during these summarizations; you just have to take their word on the results. The results are grossly insensitive and are strikingly similar to your LLMD simply asking people if they feel better.

They also had a large number of dropouts; people who stopped treatment and didn't come back to the study to report their status. These people weren't counted, then removed from the results as would be standard. In order to account for them, the study authors decided to classify all of these people as Worse, which obviously slanted the results.

 

Posted 10/14/2011 1:27 AM (GMT 0)

Hi borderlyme,

I'm assuming you are talking about Dr. Jernigan's book "Beating Lyme?"...  Anyway, I find the detoxing is not so complicated and a good habit to incorporate into one's life whether they have lyme or not.   If we are talking about the same book, I thought Dr. J. gave recipes for detoxing.

Anyway, dry skin brushing on a daily basis does wonders, the epsom salts/hydrogen peroxide baths are a must in my own experience, and if one is lucky to either have access to a FIR sauna or buy a portable one like I did, that helps so much as well...  Exercise (if one is capable of it) is another great way to detox!  Sweat out those toxins!

http://beatinglymedisease.blogspot.com/

http://www.drjerniganblog.com/articles/infections/257

Dr. Jernigan stated in one of his articles (he wrote so many that right now I can't find the link at the moment) that after his patients took Borrelogen he actually found DEAD lyme bacteria in the LUAT test (Lyme Urine Antigen Test ).  I think that's pretty cool! 

Below is  information about Borrelogen and dead lyme bacteria from the Hansa Center website (I am NOT promoting this product or doctor):

Borrelogen™ is a frequency-matched botanical formula specifically tailored to provide the body with the bio-information needed to facilitate the body's own energetic antimicrobial control mechanisms. Borrelogen™ was frequency matched to address the body's needs to deal with multiple strains of Borrelia burgdorferi, both U.S. and European.

It factors in the many pleomorphic phases, such as cystic or Lform. Also factored into this one remedy are the common coinfections, such as Babesia microti, Ehrlichia, and Rocky-Mountain Spotted fever.

The independent laboratory testing of Borrelogen™ conclusively demonstrated its Lyme antigen releasing ability to be far superior to any commonly seen with antibiotic therapy.

(Lyme antigens are the dead pieces of Borrelia bacteria appearing and counted in urine.) This research on Borrelogen™ is provided in Appendix G. Borrelogen™ was also tested by an independent pharmaceutical laboratory to be non-toxic up to 150 times the maximum recommended dosage. This "Acute Oral Toxicity" test was performed by Toxicon Laboratories, in Bedford, Massachusetts, on male and female rats, following standardized FDA protocols.

http://www.igenex.com/luatart.htm

I don't know if this clears anything up for you.. All I know is that I became symptom-free for many years now after following Dr. J's protocol and never relapsed..   This is what worked for me..

Last but not least is an interview with Dr. J. (I dislike the title of it, too dramatic for me):

http://hansacenter.com/lyme-interview.html

Denise

Posted 10/14/2011 5:15 AM (GMT 0)
Sorry Miss C, didn't mean to upset you or anything. I know you were simply relating a story of a conversation with your internist earlier and weren't trying to defend the viewpoint. I was trying to point out how dangerously underinformed she was. I tend to approach my research on this subject with a hyper-rational mindset and this might come off as insensitive, but it's simply a coping strategy to keep me from going off on endless tangents and turning every post into a novel. I get to be an insightful, sensitive guy OR a calculating, rational researcher; I don't have the multitasking ability to succeed at both at the same time.  

You should continue to question your treatment; it's both your right and duty as a consumer of medicine. Your instincts were dead on regarding the the study your LLMD performed. It is clearly designed to create an artificially high success rate (20% improvement after 3 years of treatment is a miserable benchmark for success).

In my opinion, we have to be even more dilligent in questioning anyone practicing medicine outside of the status quo (like a LLMD). The burden of proof is on the alternative practicioner to demonstrate how conventional medicine has failed and clearly show how their approach can result in a superior outcome. In this particular instance (Lyme + coinfections) the weight of evidence overwhelmingly demonstrates how the establishment position (IDSA) is inferior to the alternative position (ILADS).

Post Edited (Spall) : 10/13/2011 11:22:37 PM (GMT-6)

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