This is topic All forms of lyme CAN'T be treated, so where does that leave the patient and LLMD? in forum Medical Questions at LymeNet Flash.


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Posted by ohioperson22 (Member # 47837) on :
 
The circular argument advocating combitorial antibiotic regimens to treat "all forms" of lyme is invalidated by the latest reasearch, if you choose to believe it (which you do if you argue that way in the first place).

Granular forms. According the researcher, NOTHING can get to that form.

So, if your antibiotics get to the spirochete, mutant rod, liposomal, cysts, and cell-wall deficient, they are not getting to the granular form, nor the sequestered biofilm residents.

Based on the rhetoric championed here, then it is better not to treat at all b/c you can't get to the granular form.

And yet, people do get better addressing on one, two, three, or four forms. Lives are saved with Rocephin in emergencies. So what is the take away? Treat what you can, as it IS better than nothing.

Otherwise, somebody's getting paid, and you're not getting better (or so you think).


Of course, the study may be bogus, and granular forms may be cellular debris, or inviable liposomal forms.


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People saying that "not treating all forms will make you worse" is going to result in people getting seriously sick and dying of lyme complications because they believed that.

Do you think all the people with lyme carditis who had their lives saved by ceftriaxone would feel reading that they are worse off because ceftriaxone saved their lives? Are you freaking kidding me?
 
Posted by Keebler (Member # 12673) on :
 
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For context, do you have a link to that article you mention? Still . . .


People can most certainly recover. People have. It's complicated, of course. Yet possible.

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/91327?#000036

Topic: How did Burrascano cure himself?

See all THREE posts here by Pamela Weintraub (who is a LL journalist who recovered from lyme - and writes about her entire family having dealt with it in book "Cure Unknown")


Also see the documentary "Under Our Skin" and the sequel "Emergence" for some successes.


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=015820;p=0

PROGRESS & SUCCESS STORIES
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Posted by bluelyme (Member # 47170) on :
 
Thank you keebler you are always an optimist . There are some who get better and some who dont ..i think proto ,filairial worms and toxoplasmosis,stubborn bartonella and babesia duncani play their roles in not getting better ...tf ,six goofy and others are in remission. I know another nurse. That hope keeps me enduring this pain i would not wish on my worst enemy
 
Posted by Tincup (Member # 5829) on :
 
Bottom line- no one has all the answers. There is no one, for example, in the whole world that has what I have, has the same history and genetic makeup, etc. etc.

IMPORTANT- None of us are the same and there is no universal cure.

Not all LLMD's are the same either. They do what they can within their limits and they try. And just like those who do nothing to help us, you have to pay them.

As we go along and learn more, the LLMD's and their patients adjust as best they can.
 
Posted by ohioperson22 (Member # 47837) on :
 
quote:
Originally posted by Keebler:
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For context, do you have a link to that article you mention?

Keebler, it is on the a YouTube excerpt interview of Dr S's reasearch. She says of the "granular" form: "nothing will work for that" (not her exact words.
 
Posted by Lymetoo (Member # 743) on :
 
Glad I'm well or I would be tempted to be very depressed right now.
 
Posted by ohioperson22 (Member # 47837) on :
 
quote:
Originally posted by Lymetoo:
Glad I'm well or I would be tempted to be very depressed right now.

If you could getter better even with the untreatable granular forms, then hopefully all of the sick folks here can as well!
 
Posted by Keebler (Member # 12673) on :
 
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The direct link to that would be of help,

to get the right one. And, if it's a long segment, a note to the time where she states that. It could take hours to find it but since you know the one you are looking for, hope that won't be too much trouble.

Thanks. But, still . . . if nothing works "on that" -- I hear "to date" . . . "yet" . . . or "of the things only I've so far considered" . . . .

To me, that still does not mean one cannot get well, or better. People certainly have. Some don't of course but we have a choice in if we are going to do one thing we can for ourselves this hour that might help - or not.

Sometimes, it's just adding those steps together over time. One good thing now, attending to dinner, I suppose. That always makes me feel better.

There are always multiple ways to approach anything - or work around some, too. We just might not know what they are right now. Same can be said for researchers. I'm glad that Dr. Sapi continues to have persistence in her research.
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Posted by ohioperson22 (Member # 47837) on :
 
https://youtu.be/AmvgOfIN_8c


Start watching at 4:02.
 
Posted by Keebler (Member # 12673) on :
 
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Thanks so much. I certainly can't put that in context right now (or ever?). Maybe in the six years since she said that, there is more to it?

You can search with "her name" & the key "term" at Google and sometimes that can fast track us to more current links. Maybe do that at her YouTube page, too.

This is a good question for your LLMD. Yet we know that some have most certainly gotten better so the lack of full context of that statement clip might skew our assumptions. (can't say that just right). Looking forward to seeing more of that -- tomorrow. It requires a lot of concentration.
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Posted by Keebler (Member # 12673) on :
 
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Google: "Eva Sapi" borrelia, "granular form"

and also drop off "form" for a second search

I got a lot of possible hits but must stop now. Hope that helps you find what you need.
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Posted by Keebler (Member # 12673) on :
 
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From my file notes, these might add some context to your exploration.

http://www.townsendletter.com/FebMar2006/lyme0206.htm

Biochemistry of Lyme Disease: Borrelia burgdorferi Spirochete/Cyst

by Prof. Robert W. Bradford and Henry W. Allen

Townsend Letter - February / March 2006


The author below overcame (to a remarkable degree) a very rough case of lyme that had been previously misdiagnosed. He has been on a some interview programs that you might find out there in the cloud.

http://www.borelioza.org/materialy_lyme/the_complexities_of_lyme_disease.pdf

The Complexities of Lyme Disease (A Microbiology Tutorial)

by Thomas M. Grier - a 17-page pdf.


https://www.youtube.com/results?search_query=Grier%2C+lyme

YouTube search: Grier, lyme


http://www.youtube.com/watch?v=r8tESJVvM88

The Biology of Lyme Disease: An Expert's Perspective

26 minute YouTube video - Jul 20, 2013

This is a 30 minute video with Dr. Alan MacDonald, a retired M.D. and board certified in Anatomic Pathology and Clinical Pathology. This revealing interview from May 2013 (1 of 3) covers many of the controversies associated with Lyme disease:
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Posted by Jordana (Member # 45305) on :
 
I don't think Dr. S exactly said that, OP.

She has Lyme. She believes ultimately that it's the immune system that kills all forms.
 
Posted by Robin123 (Member # 9197) on :
 
It could be the terrain as well. For example, many who have gotten stem cell injections are doing better. That is, the body is made stronger to fight off the infection.
 
Posted by Lymetoo (Member # 743) on :
 
quote:
Originally posted by ohioperson22:

quote:
Originally posted by Lymetoo:
Glad I'm well or I would be tempted to be very depressed right now.

If you could getter better even with the untreatable granular forms, then hopefully all of the sick folks here can as well!
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Exactly .. so be careful not to discourage others.
 
Posted by ohioperson22 (Member # 47837) on :
 
quote:
Originally posted by Lymetoo:
quote:
Originally posted by ohioperson22:

quote:
Originally posted by Lymetoo:
Glad I'm well or I would be tempted to be very depressed right now.

If you could getter better even with the untreatable granular forms, then hopefully all of the sick folks here can as well!
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Exactly .. so be careful not to discourage others.

Exactly why people shouldn't be so cavalier saying to people "if you don't treat all forms then you won't get well, etc"

Exactly my point of the thread.
 
Posted by Keebler (Member # 12673) on :
 
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There is so much information packed into her presentations that it's easy to take things out of context or hear an important bit but then miss the follow up bits that explain more about it.

Isolated statements generally are never complete when dealing with lyme / TBD. She builds on each thought, not just as a presentation moves on but also as her work moves ahead. And the follow up bits we might be waiting to hear might be in the same talk, they might be in one to follow.

The full body of her work likely explains questions we have.
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