poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Well, I always have the feeling her posts are important, but someone with a biochemistry background would be needed to understand them. And that ain't me.
Posts: 2888 | From USA | Registered: Mar 2004
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Poppy, we just need to find the 'researcher(s)' who are reviewing each of those posts and get a Cliff Notes version. Then we will be in the know too.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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BoxerMom
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Member # 25251
posted
poppy - I understood you completely. I'm not laughing at you. I'm laughing at your comment!!
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Razzle..your mailbox is full...can't send.
Others...you could ask your doctor for help (or someone else in the medical field that you know) to help you to understand i.e., to grasp the situation.
16 pages IS a Cliff notes version.
Bb is an extremely complex pathogen.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Just cleared some stuff out of my mailbox...please try sending again
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Sent...
revised and more info. added with easy to access links to prove what I am saying.
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Razzle
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Member # 30398
posted
Thanks Marnie!
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
You're welcome. Go slow and read it over and over...which we ALL have to do sometimes until what we are reading "clicks"...and an understanding begins to happen.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Do you truly believe any LLMD spends the time to go through detailed biochemical processes with a sick patient? What billing rate would that be per hour? The answer is no. You get billed for your office visit, get a few scripts, nutritional advice, and wait for the next appointment.
I may come across wrong, but I feel one has a moral obligation to clarify their research in a dumbed down version when transmitting it to a group of sick individuals struggling to survive.
This has gone on for years. Help is appreciated of course, but the audience here mostly can't be helped by the way you present.
Make people TRIAL these suggestions to get some perspective if the theories are accurate. Without trials, it's all just speculation. We'll never know if any of the endless ideas will lead to improvement. In the end, that's all the Lyme patient cares about - having their life back. This isn't a project for me. I'm watching my whole damn life slip away, money flying fast, and my ability to take care of my child diminished.
This is why I believe the end interpretation is so important to all of us. Asking doctors to explain all this is just not compassionate if in fact you have a great grasp on the research. if this was being published to medical journals for research purposes, my outlook would be very different. It's all how it's being used/presented.
quote:Originally posted by Marnie: Razzle..your mailbox is full...can't send.
Others...you could ask your doctor for help (or someone else in the medical field that you know) to help you to understand i.e., to grasp the situation.
16 pages IS a Cliff notes version.
Bb is an extremely complex pathogen.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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quote:Originally posted by seekhelp: Do you truly believe any LLMD spends the time to go through detailed biochemical processes with a sick patient? What billing rate would that be per hour? The answer is no. You get billed for your office visit, get a few scripts, nutritional advice, and wait for the next appointment.
I may come across wrong, but I feel one has a moral obligation to clarify their research in a dumbed down version when transmitting it to a group of sick individuals struggling to survive.
This has gone on for years. Help is appreciated of course, but the audience here mostly can't be helped by the way you present.
Make people TRIAL these suggestions to get some perspective if the theories are accurate. Without trials, it's all just speculation. We'll never know if any of the endless ideas will lead to improvement. In the end, that's all the Lyme patient cares about - having their life back. This isn't a project for me. I'm watching my whole damn life slip away, money flying fast, and my ability to take care of my child diminished.
This is why I believe the end interpretation is so important to all of us. Asking doctors to explain all this is just not compassionate if in fact you have a great grasp on the research. if this was being published to medical journals for research purposes, my outlook would be very different. It's all how it's being used/presented.
quote:Originally posted by Marnie: Razzle..your mailbox is full...can't send.
Others...you could ask your doctor for help (or someone else in the medical field that you know) to help you to understand i.e., to grasp the situation.
16 pages IS a Cliff notes version.
Bb is an extremely complex pathogen.
Thumbs up from me for seekhelp's thoughts.
Sorry, Marnie, I know you're probably just trying to help, but to me your suggestion seemed a bit offensive. I might not have a degree in sciences, but I do have an education and used to work in one of the Bona Fide Professions prior to becoming ill.
I don't know whether you are a Lyme patient, a science/medical professional, or an uneducated arm-chair researcher . . . at the end of the day I suppose your credentials don't really matter.
Rather than repeatedly posting theories, ideas, "finds" as you call them, or even things like your post of a year or so ago that you found a cure for Lyme, cloaked in some pseudo lab bench lexicon, giving people without a science background the impression (and direction) that your posts are only for "medical professionals" . . .
well, I hope you don't mind my saying that the posts rather defeat the purpose of a Patient Support Forum.
Perhaps I'm being unrealistic or just missing the boat entirely (it wouldn't be the first time I've missed the boat, by the way!), I have perhaps the mistaken expectation that someone who truly understands what they are researching and trying to present will be able to summarize it and even translate the message into a form that is easily digestible, for the most part.
Telling the kind members here that your posts are only for "medical professionals" or that your "research" perhaps should be taken to a doctor for interpretation is telling said members that they are merely members of the Great Unwashed.
In other words, you have the answers, you've found pearls of wisdom, some of them labeled by you as "urgent" or "important," but it's only for you to know, or only for those with a medical background to understand.
C'mon! Even the science/medical authors who publish on PubMed have to break down their jargon and present a cogent summary and explanation of the studies, research, and findings.
Where would we be today had Dr. B written his Lyme Treatment Guidelines in a similar manner? Lyme = Spirochetes = zinc fingers + regulated berberine -- stay with me now . . . uptake inhibitor = ab = rhubarb, Whoa!
I cringe when I contemplate what Pamela Weintraub's book "Cure Unknown" would have looked like in a similar format.
On the whole, I think there are real people behind the many posts on this board. Real people with a devastating and life-threatening disease called Lyme. They are trying to figure out how to save their own lives or lives of loved ones.
And they can't benefit from a bombardment of posts filled with flippant pseudo shorthand.
.
Posts: 503 | From Maryland | Registered: Oct 2007
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
I have to agree.
I cannot imagine taking 16 pages of 'notes', presented how they here on this forum, to my 30 minute appointment
with my Lyme Literate MEDICAL DOCTOR, and telling she/he to read and study.
I'm sure you do mean well in your heart, and of course, are only trying to help, but IMO, it's not realistic.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Not saying that I can read much - ever - and I mostly scan here and there. So, don't go to any extra work but, sure, I would like to see what you are so excited about if it's already together.
No doctor, just up to myself to save my own life, so I will never turn down information that might help shed some light.
I sent you a PM with my email address. (My PM function is usually off).
Thanks so very much, Marnie. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I again want to state I'm not saying Marnie doesn't mean well, but it has to be taken to the next level. If you're going to write as a subject expert and provide hope to ill people, complete the thoughts and ideas IF they are worth mentioning. Given the time and efforts you make to demystify this illness, I have to believe you feel your findings are meaningful.
Even one successful idea, if cloaked in pages of an unreadable format, could be something that helped someone immensely. Since no one understands it besides you and supposedly other experts, it all goes for not. Why would you want to sleep knowing a little more effort could be the key to helping someone get out of this nightmare?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I am always amazed when anyone with lyme can think clearly, remember and understand scientific jargon - but there are those of us that haven't lost it upstairs yet. I am still trying to figure out the methyl cycle mutations and how they interrelate.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Thanks for the offer, Marnie. I've PM'ed you.
Posts: 962 | From Charleston | Registered: Jan 2002
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
The more that one adds to the equation (the more meds and supplements), the more likely there may be a
negative interaction.
It is very important that the meds and supps work in
synergy.
Example: garlic promotes STAT1 (a cell signal). Berberine INHIBITS STAT1 and STAT4. So if you take those 2 together, berberine can't do its complete "job".
Berberine IS in many current trials (Parkinson's, AD, etc.) and its use for diabetes is very recent.
One of the BIG problems is...which FORM of berberine is best...chloride or sulfate...
because that could make a difference in the outcome - trial results. Not to mention dosage and timing issues too.
[ 07-08-2012, 10:38 AM: Message edited by: Marnie ]
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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nonna05
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Member # 33557
posted
Marnie,,I PM'd you... then read more here,,,so I want/need help.. but have to be able to understand it to use it Heek I can't even get a schedule in my head of when to take what with what and why...Others have tried to help...
But the small differences mess me up,,and then my " SHORT HAND THINKING"...really gives pause to members here.
Bless you for trying and I pray it will help the situation.....
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
Marnie,,I PM'd you... then read more here,,,so I want/need help.. but have to be able to understand it to use it Heek I can't even get a schedule in my head of when to take what with what and why...Others have tried to help...
But the small differences mess me up,,and then my " SHORT HAND THINKING"...really gives pause to members here.
Bless you for trying and I pray it will help the situation.....
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
Marnie,,I PM'd you... then read more here,,,so I want/need help.. but have to be able to understand it to use it Heek I can't even get a schedule in my head of when to take what with what and why...Others have tried to help...
But the small differences mess me up,,and then my " SHORT HAND THINKING"...really gives pause to members here.
Bless you for trying and I pray it will help the situation.....
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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posted
Fuzzyslippers, you took the words right out of my addled brain lol. That was an amazing post, and I agree with you one thousand percent. Thank you for writing that. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
There are family members of lyme patients on lymenet too (I am one)
and
there are lyme patients on lymenet who are not suffering with neuro symptoms.
Please don't blast those who have the ability to put the puzzle pieces together and are working very hard - spending many hours - to find a SAFE and AFFORDABLE cure.
One can NOT find a cure for a disease if they don't know HOW that disease is working...how it started and what is going on.
If we truly knew how to cure lyme, the protocols would not keep changing.
Did you know this:
Warburg effect:
Cancer cells don't live on glucose, since they are highly adapted to survive on protein and fats.
I think Bb works the same...while "he" can use glucose, I believe his preference is proteins and fats (amino acids) to make "his" RNA, DNA, cell wall, etc.
ONGOING inflammation is a cancer trigger and more than one pathogen can trigger cancer (H. Pylori - stomach cancer for example). The root cause of cancer is a pathogen - bacterial, viral, fungal which triggers inflammation.
Knock out the pathogen AND get the inflammation down at the same time.
Did you know that in experiments with mice (VERY recently!) berberine halted MS? If you had MS and read that abstract, wouldn't you want to talk to your doctor about MAYBE trying berberine?
It takes YEARS to go from mice results to human trials to actual recommended use.
And keep in mind...it is available OTC...which won't make the drug companies very happy.
Go here and see how berberine actually works better than a current drug for diabetes:
One of the BIG problems is...most websites simply say "berberine", but there are different FORMS of berberine...did they use the chloride form or the sulfate form? How much was given and how often? Did they give it before meals or inbetween?
These facts all make a difference in the trial "outcomes".
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- At first glance, this detail looks to be very helpful. I have a long delayed (though seeming minor) project that I must finish today or tomorrow so I can't read it all now but I just want to say
how important it is to at least take a look at the links that have been so generously provided to us.
With constant vertigo, etc., I can't really comprehend everything that I come across but it's important to at least have that exposure. Often, even just one line - one thought - might make a difference to me . . . somehow . . . sometime.
Even at first glance, I came away with an increased understanding of one major point. I get THAT is it important, not exactly HOW. But HOW can wait and I don't even expect to understand the HOW of it all, anyway (just so tired).
However, if we just know THAT something specific matters, that's a huge start. Then, we can go back and re-read bits & pieces in short time segments as we are able. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Note to those who received the pages...
I made spelling mistakes...rhein, not rheim.
And this:
Glutamine can be taken up by cancer cells, so if we LOWER the amt. of available glutamine by triggering gluconeogenesis via the ***kidney***�that maybe a good thing.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Re: Glutamine
Sorry that I can't read now for the context but anytime I see "glutamine" I feel it important to note that other than a moderate amount from food, it can be excito-toxic for those with lyme.
So, it seems that lowering it (as suggested in the note above) would be in line with the general need to keep it from getting too high for us.
See the post: Caution: Aspartate; Glutamine; and Phenylalanine -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Yup...because cancer cells LOVE that amino acid.
Scroll up...(any others reading as I corrected a few typos.)
Next...I need to post the links re: P8 to what I'm 99% sure is something WE have too (it is in the tick's saliva AND in us)...
Endobrevin (VAMP 8)
I wanted to know WHAT P8 IS...I know what it DOES...inhibits mannose binding lectin and this inhibits the FIRST pathway we need to chop up Bb's proteins/antigens to present to other cells so we can make a perfect antibody to them...all of them.
And...I need to review all of my berberine files and begin to list all of the functions, all of the uses in various diseases with links. I keep finding more and more.
But first, I must pay some bills and clean the house which I have neglected.
I'd rather research.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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posted
I do have somewhat of a biochemistry background as I took biochem, microbiology and cell biology in university years ago, and I have to say that all the random bits and pieces of information don't seem to lead anywhere.
Here's how we can all understand things: Thesis or abstract - Supporting information - Conclusion. (Emphasis on abstract/conclusion).
Posts: 161 | From vancouver island | Registered: Feb 2012
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posted
Marnie - back to Bb possibly using fats and protein to survive and thrive. Some of us here are on a low fat vegan diet and are feeling tons better.
Maybe it's simply diet.
Posts: 845 | From Northeast | Registered: May 2011
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posted
With Lyme, I don't think anything is simple.
Don't know if this article I'm attaching has been referenced here before, but I found it interesting, it shows just how sneaky Bb can be when evading the body's immune system. I look forward to reading Marnie's research and see if I can make sense of how everything comes together.
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