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Researchers’ discovery may explain difficulty in treating Lyme disease (new treatments discussed)

duncan

Senior Member
Messages
2,240
Hip, hence my earlier alluding to the CDC at least appearing to become more politically correct by changing the name from Post-Lyme Disease Syndrome, to Post-Treatment Lyme Disease Syndrome.

Some (including, I suspect, most IDSA followers) may simply write this off as posturing, and deem the name-tweaking ultimately meaningless. It is pretty much understood by the majority of the forces that control most decisions re: Lyme policy, that PTLDS means Bb has been eradicated.
 
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Antares in NYC

Senior Member
Messages
582
Location
USA
don't want to demotivate others because there are cases where people have recovered in the real sense of the word, but I'm not convinced that even if there is persistence that a recovery is necessarily possible after the disease has progressed past a certain stage, there is clearly some degree of irreversible damage in many cases. Treating the persistence may therefore be a necessary but insufficient step, it's like goodbye Lyme city...welcome you are now entering ME/CFSville.
That is exactly my biggest fear, since nothing seems to be working. :-(

PS: Your avatar is one my favorite albums of all time. Good taste, mate.
 
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Wayne

Senior Member
Messages
4,307
Location
Ashland, Oregon
That is exactly my biggest fear, since nothing seems to be working. :-(

Hi Antares in NYC,

I've long had the same fear, but Bryan Rosner, in his latest book, "Freedom From Lyme Disease - New Treatments for A Complete Recovery", has stories of huge improvements in long-term Lyme cases. If you click on the image below, it will take you to Amazon.com, where you can read extensive selections from the book [by clicking on the book image], as well as over 60 comments from those who've read the book. -- Reading Bryan's books always leaves me feeling more optimistic. HERE's a link to an 8-min. YouTube video by Bryan where he discusses his latest book.

Here's a snippet from one of the comments on Amazon.com:

I’d gone from extremely ill to highly functional. I got here using only Rife after the failure of years of antibiotics. But I have my share of nagging symptoms letting me know that the finish line is still a bit down the road. Will it take more time or something else?​

 
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Antares in NYC

Senior Member
Messages
582
Location
USA
I am not being disingenuous; I am doing what I often do on this forum when I see people making claims without presenting adequate evidence: being a bit skeptical. Usually this results in people providing better evidence, and/or clarifying their arguments.

In a sense though I am just playing devil's advocate, because given the experience of insurance company meddling in the ME/CFS world, I don't find it difficult to believe that they may have also been meddling with the Lyme world too. However, there needs to be better evidence provided for this meddling, if it exists.
I get it, Hip. Please keep in mind there have been official investigations of this matter with close-door settlements, and they even outmaneuvered the CT attorney general. And as others have posted, it doesn't matter what the CDC has on their website in respect to chronic Lyme of "PTLDS", as they tend to talk from both sides of their mouth: try to see a doctor in the US or Canada to treat you for chronic Lyme, and see how far you get. Most doctors are terrified to lose their licenses.

@duncan and @Dufresne have explained the situation better than I could possibly do (my brainfog is brutal), but be aware this is happening here every day. Just last week we posted about two additional doctors being investigated by their state medical boards for treating patients for chronic Lyme beyond the IDSA standards. This witch hunt has prompted legislation in New York, Vermont, Rhode Island, Connecticut and New Hampshire to protect LLMDs. In other states they are still open to persecution and losing their business by insurance lawsuits and accusations of improper care by the IDSA via regional medical boards. I know it's difficult to believe, but we are not making this up.

Also, as @Ema posted, things are more subtle and complex. If there was a cartoony trail of corruption like in the case of FIFA (with literal exchanges of money bags), Blumenthal would have had a better outcome of his 2008 investigation. At the end of the day, the ones benefiting from the imposition of IDSA guidelines are the insurance companies that use them to deny care, or to get rid of doctors that try to get around them.
 

Antares in NYC

Senior Member
Messages
582
Location
USA
Hi Antares in NYC,

I've long had the same fear, but Bryan Rosner, in his latest book, "Freedom From Lyme Disease - New Treatments for A Complete Recovery", has stories of huge improvements in long-term Lyme cases. If you click on the image below, it will take you to Amazon.com, where you can read extensive selections from the book [by clicking on the book image], as well as over 60 comments from those who've read the book. -- Reading Bryan's books always leaves me feeling more optimistic. HERE's a link to an 8-min. YouTube video by Bryan where he discusses his latest book.

Here's a snippet from one of the comments on Amazon.com:

I’d gone from extremely ill to highly functional. I got here using only Rife after the failure of years of antibiotics. But I have my share of nagging symptoms letting me know that the finish line is still a bit down the road. Will it take more time or something else?​
Thanks for the info, Wayne. I'm very intrigued yet also skeptical about Rife machines, although I have read that some people actually achieved full remission by using those things. Have you tried them? Any validity to those claims?
 

Wayne

Senior Member
Messages
4,307
Location
Ashland, Oregon
Thanks for the info, Wayne. I'm very intrigued yet also skeptical about Rife machines, although I have read that some people actually achieved full remission by using those things. Have you tried them? Any validity to those claims?

Hi Antares, yes I have used a Rife machine, with mostly positive results. I posted fairly extensively on my experiences [Improving Using Rife and MMS for Lyme] back in 2011, and have been recently reviewing those posts as I prepare for my next round of Rife therapy. I wrote back then in somewhat of a diary form, and is proving to be helpful to review some of those details.

I initially got good results, but after a few months felt my progress had somewhat halted. This was about the time I met a man who claimed to have cured himself of Lyme using homeopathy. So I put all my efforts into what he had done, and put Rife aside so as not to complicate things. Another reason I stopped the Rife was because a prominent Lyme doctor, David Jernigan, strongly feels that any therapy initiating Herx reactions should be avoided. The homeopathy approach I was trying was my own attempt to avoid those Herx reactions.

But the beneficial homeopathy results started fading after a few months, similar to my Rife experience. I felt it was creating shifts, often leading to feeling better, but they didn't persist, and I finally gave up. Looking back, it may have worked out better if I had done the Rife and homeopathy simultaneously, and done a few more things that Bryan Rosner outlines in the book I mentioned in an earlier post.

I have that book checked out from the local library at this time, and was reading it last night. In the book is a story of a man with debilitating Lyme who tried antibiotics for seven years, having success at times, but falling into very deep down cycles as well. Feeling desperate, he decided to give Rife a try, and almost immediately began to feel better, and did not experience the horrendous down cycles brought on by long-term abx use. After his first Rife session, he never did another abx. Within a year, he felt fully functional, and is again working full time. So, just one example of somebody using Rife successfully.

With B. Rosner's book in hand, I feel I have a lot more information to work with, and can support my Rife therapy in ways I wasn't doing last time around. Now that my dreaded "winter blues" have given way to a normally easier to manage summer season, I expect to start the Rife again, and stay with it much longer than I did last time around--almost four years ago now. Unbelievable--where did those years go? I guess just slipped away in my constant Lyme brain fog.

I personally think it would be good for anybody with Lyme to consider Rife. In some cases abx can bring about great results, but those results often go away when abx are withdrawn, and a number of other complications from long-term abx use can set in. Bryan Rosner believes abx are important in Lyme treatment, but believes they should only be used for very brief periods of time and at very specific intervals.

I hope that helps some. :)
 
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Wayne

Senior Member
Messages
4,307
Location
Ashland, Oregon
I've been reading Bryan Rosner's latest book [and apparently last], and continue to be impressed by his depth of knowledge and understanding about the many facets of Lyme Disease. I would venture to guess he probably knows far more than even some of the LLMDs who specialize in treating Lyme. I just disovered he's going to put his energies into a regular newsletter instead of writing future books. Here's his reasons:

"Since I wrote my last Lyme disease book, I’ve already come across a significant amount of new, promising information. However, in the year 2015, books are just not the best way to get new information to my readers anymore. Here’s why:

Books take years to publish, but new Lyme disease information becomes available almost daily

Books are overwhelming to consume all at once, but frequent online updates in blog format are much easier to read and assimilate

Books are difficult to update, even though updates are needed periodically."
The price of his newsletter subscription is $14.95/year. Thought I'd post this information in case anybody else might be interested. -- Wayne

 
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msf

Senior Member
Messages
3,650
Does he give advice such as, spend time just sitting around on logs in forested areas? Or is he showing that he has no fear of Lyme? To be fair to him, he has covered up well, which is something I will do if I ever feel well enough to go on long walks in the countryside.
 

brenda

Senior Member
Messages
2,270
Location
UK
Haha, he shouldn't have dark pants on though. They should be light coloured to help spot the ticks. Wayne l am going to start to treat Lyme again soon as l have got my nutritional deficiencies more under control.
 

duncan

Senior Member
Messages
2,240
msf, your paper above was one of the early ones, I think, associated with persisters. I could have sworn the first united Northeastern's Lewis with Zhang of Johns Hopkins.

Regardless, notice Auwaerter's collaboration in the nih piece. I can almost sense which wording he influenced...:) For instance, I'd guess the entire first sentence.

Oh, also, as noted earlier, these are in vitro.

Still, just getting someone like Auwaerter to own up that persisters even exist is potentially a big step in the right direction.
 
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justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
What does the CDC call it if for instance you have very advanced Lyme, of many years standing and cannot be cured by two - four weeks of Doxycycline because the lyme has wrecked your immune system, because you were NEVER tested.

There is so much discussion in the Lyme world of chronic lyme PTLDS etc, but little discussion about how to deal with people who were misdiagnosed for years to begin with - this actually covers a vast group of people who have been left with no treatment at all. We don't have PTLD because we have NEVER been treated.

I think its important to find a place and a treatment for people like me and my daughter who are in this category.

Sorry bit off topic...
 

duncan

Senior Member
Messages
2,240
If I had to hazard a guess, @justy , I would say they would default to PTLDS. You might think they would at least consider late stage Lyme refractory to treatment, but if they did, it would certainly qualify as an exception to general practice, in my opinion.

If you can demonstrate damage to your immune system, that might help with getting them to admit to a possibility of the latter, but I strongly suspect you would never get them to admit it was Bb that disrupted and broke your immune system to begin with.

Remember, IDSA/CDC try to characterize Lyme as a usually innocuous little inconvenience, that rarely presents with complications.