springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Marnie, Can we have a discussion about your post?
I love reading your posts!!
but .. sadly I can not comprehend most of it.
And the parts I do then i get stuck on the next sentence and I can not end up connecting the dots that would give me the overall concept and points.
I know many of us have asked for you to please summarize and post it more basic terms for us. It seems difficult for to do? Or is it that you would rather not.?
Its your posts and you can type as you choose.
But..
Marnie.. Maybe you can help us out here.. We are all eager to learn from you but many have trouble understanding the terminology and how it is presented.
I sure hate to have to just accept that and I would love love love to gain the knowledge from all the work and the intelligence you have..
It makes me sad..
Is there some sort of way we can find a way so that we all can benefit more from your great posts?
Ideas ??
anyone ??
: (
THANK YOU so much for all the time and effort you put in. This is not a complaint.. but a person eager to learn more and learn from you.... reaching out... with a HUG> and gentle.. request...to try to help me understand more of what you say....
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- To better understanding the terminology:
First, a basic understanding of the science of lyme really helps. Not just the symptoms or medicines but the science of it. Reading form the ILADS authors is a good start. See the section on Article and Presentations. ( www.ilads.org )
-----------
This article is also immensely helpful with presenting some background concepts:
From the Townsend Letter for Doctors & Patients - February/March 2006
BIOCHEMISTRY OF LYME DISEASE: BORRELIA BURGDORFERI SPIROCHETE / CYST
==================================
When reading, these steps are helpful:
* DICTIONARY or ENCYCLOPEDIA - or a handy website. Even Wikipedia helps to explain a few basic concepts. They may not be the best at everything they do (their lyme page lacks) but some of their pages are excellent. The pages are very well laid out and they have great graphics, too. That always helps me in visualizing details.
* PRINT IT OUT. For complex posts or articles, I copy and paste - and print - and then read it out later - in stages, over many days. Highlighting, drawing circles and connector lines is also key to my eyes and brain putting it together for me.
* SPIN-OFF SEARCH. One can also search the web for other articles on the topic or key terms. That is a good idea anyway, as it give a more well-rounded view. Sometimes, a spin-off search will have you finding just the article that makes it all click.
* DISCUSSION. Sometimes, if my brain is just swimming, I just wait for the discussion to come along on the thread and pick up key points from that.
* TUTOR. I have a friend or two with whom I can discuss these kinds of things. In science, they are much smarter than I am and that's good.
-----
If someone goes to the trouble to pour their time into research, work it up and share it, I am quite happy to put the work in from there. I understand that I just may not be able to read as if it were People magazine. And that's okay.
Marnie, your posts are a very welcome slice of research. I wish we had more of that here. While I may not always understand the science, if I take the steps above, that works very well for me.
I don't expect everything to be watered down to my immediate understanding at this stage of my brain fog. We each have our own strengths so please continue to share with us important parts to this puzzle in a style that works best for you.
Marnie's posts are a gift. However that comes, I am happy to graciously accept the gift as presented. And, I'm also very glad that she comes back to the threads for continued discussion and answering questions. That is wonderful.
Thank you, Marnie. -
[ 11-08-2009, 03:08 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Here's a start at learning how to search frequent terms in Marnie's posts. It's also good to have these descriptions in hand when reading "The Biochemistry of Lyme" article linked above.
(This page also springboards to a link explaining the autonomic nervous system, something very much affected by lyme.) -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
There are a few nurses and others on this board who do understand medical terminology.
I know...it is hard.
Don't even try to explain the stock market to me!
In one ear and out the other.
Bb is an incredibly complex pathogen and so much is happening.
Start here (keep reading it over and over until it "clicks"):
In the tick's stomach, Bb expresses an outer surface protein C.
= OspC
Bb picks up SALP (a protein in the tick's saliva that attaches to OspC). This allows Bb to avoid immune detection and slows down the response.
It takes awhile for our own antibodies to be made. B cells make antibodies. Some B cells go to the thymus to become T cells which then present antigens (proteins) to the B cells so they can make the RIGHT antibody to destroy Bb.
Meanwhile...since our own antibodies are taking awhile to be made, our body upregulates inflammation (via inflammatory cytokines) as an immediate response. Bb NEEDS that to happen!
Inflammation is normally a part of healing, but it is supposed to shut off and in lyme, it isn't. This is very very bad. Pain, too many free radicals...
When we are wounded, we often put a COLD pack on the area FIRST and then LATER, heat. We reduce inflammation FIRST...tame it down then use heat to heal.
To invade, to be pathogenic, Bb has to change to a different outer surface protein - OspA first.
(That was the Osp the ineffective vaccine was based on.)
We impact that outer surface protein A (=OspA) by
downregulating dopamine.
We do that by breaking down tryptophan -> melatonin via our DEFENSE cells.
Melatonin decreases dopamine.
(Two RECENT pubmed abstracts have OPPOSITE views if low dopamine is protective or is harmful! Boy, they do not make my research easy!)
Bb's OspA binds to norepinephrine and epinephrine so..
we downregulate them = not available for Bb's OspA to lock onto!
This FORCES Bb to express OspB. (Usually).
OspB is exactly what our antibody goes after.
mAB CB2. Monoclonal antibody that is supposed to lock onto a particular cannaboid receptor (CB2).
("Pot" impacts CB1 AND CB2.)
Unfortunately, with Mg levels diving (at the outset of lyme),
***our antibody to Bb's OspB is "damaged".***
Bb has a PKC inhibitor. That means it is preventing a calcium triggered phosphate transfer (actually it is impacting/inhibiting 2 phosphate transfers). It appears Bb isn't letting phosphates attach to serines.
Phosphatidylserine is involved in helping control the HPA axis. Hypothalamus, Pituitary, adrenal "conversations" between those glands. Our body chemically sends signals. One gland can sort of tell the other one to stop producing specific hormones or make more of others.
LOGIC says, if Bb is "camped out" in our defense cells and has a PKCB2 inhibitor that cell may indeed send a "call for help" - a receptor - to the surface. That receptor is CB2.
If we HAVE a healthy antibody and it locks onto the CB2 receptor, this triggers an enzyme called alpha hemolysin.
That enzyme destroys RBCs...which release stores of Mg and hemoglobin which is broken down into some pretty toxic things.
In addition alpha hemolysin ALSO metabolizes liposomes (the building blocks of lipoproteins).
So...with Mg available...there goes Bb's chance to rebuild "his" cell walls via the "cholesterol pathway" via inhibiting an enzyme called HMG CoA reductase. AND alpha hemolysin also is destroying Bb's cell walls.
We are at a huge disadvantage to fight because Bb is EXPORTING Mg as ONE of the components to build "his" biofilm.
MANY pathogens use Mg, Ca, Fe, and glucose to make biofilms for immediate "protection" and for quorum sensing (signaling - "talking to" one another).
Bb has a gene for transferrin (a protein) which transports Fe and it has genes for Mg and Ca transport too.
Okay...now about biofilm. It also protects the pathogen from oxygen.
Bb is not a *strict* anaerobe (doesn't need oxygen at all), but it does not like MUCH OXYGEN.
That biofilm helps prevent oxygen (too much) from REACHING Bb.
Our cells need oxygen and need glucose and need Mg attached to our ATP as Mg-ATP to transfer phosphates.
Okay...catching on so far?
Bb has 2 major lipoproteins and it robs us of the nutrients to make them.
They are:
"Phospholipids are an important component of bacterial membranes.
Borrelia burgdorferi differs from many other bacteria in that it contains only two major membrane phospholipids:
phosphatidylglycerol (PG) and phosphatidylcholine (PC)"
Since this is fairly common knowledge do I have to link it?
Think less phosphates...think about less glycerol and less choline - for US.
If you cannot grasp the above...I don't know how to explain all of this to you because it gets even more complex.
I'm trying!
P.S. As a defensive move - in a way, our body looks to accumulate very toxic Hg...mercury. Hg does damage proteins in bacteria. That is why it is/was added to vaccines. But...it also damages our OWN proteins, esp. those that coat our neurons. So...autoimmune or self sacrificing? I believe we are trying to destroy a pathogen by sacrificing "self".
The body is trying hard to preserve our life for as long as possible. It is using incredible "back-up" routes...not nec. good ones!
NORMALLY we are exposed to Hg in our environment every day and the amt. in vaccines is like a "days worth". But...we normally CAN slowly get rid of Hg via our skin (esp. feet and hands) and bile salts. But bile salts need nutrients to be made and often in lyme, bile "sludge" develops and ridding Hg becomes a major problem.
[ 11-08-2009, 03:12 PM: Message edited by: Marnie ]
Posts: 9424 | From Sunshine State | Registered: Mar 2001
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Thanks, Marnie. As you say, this is extremely complex and you do a good job of walking us through it - or at least getting us to the neighborhood.
springshowers,
Wiki is a good help if you are not familiar with some of the terms, for background you can look here. While Wiki's entry about lyme treatment really lacks, some of the science here is a place to begin understanding borrelia's complexity.
If reading straight off the a LymeNet post, when freqently looking up terms, it is easier if you open another separate web page for your encyclopedia to sit side by side on your monitor.
* CITATIONS / SOURCES - usually give you more to go on.
At the bottom of Wiki's microbiology page, you might look up citation # 31 Macdonald AB (2006). "A life cycle for Borrelia spirochetes?".
* MAKE YOUR OWN DICTIONARY - many of these terms come up time after time. You might print out the key terms and place in a 3-ring notebook with tabs.
After seeing Wiki's page on the microbiology it sure looks like Marnie does really simplify this. Wiki is about as watered down as you'll get and that page looks like rocket science. There exists no such cheat sheet as "Cliff Notes to Lyme" - and that is why I am so grateful to anyone who wants to explain all this.
Even if I don't get it, the process of their work is working for all of us. It gets them thinking - looking - asking - all for us. -
[ 11-08-2009, 03:55 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Thank God for wikipedia!
Posts: 9424 | From Sunshine State | Registered: Mar 2001
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Yes Marnie you do a great job, but can get over our
heads. It may help to start at the basics. Anatomy
and Physiology. If we start at the beginnings (how
every organ, cell, metabolic interaction/reaction
takes place), maybe we can learn more of the
complex stuff. I agree---P.S. As a defensive move - in a way, our body looks to accumulate very
toxic Hg...mercury. Hg does damage proteins in bacteria. That is why it is/was added to
vaccines. But...it also damages our OWN proteins, esp. those that coat our neurons. So...autoimmune
or self sacrificing? I believe we are trying to destroy a pathogen by sacrificing "self".
Do you believe there is enough evidence to say it actually alters DNA?
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Borrelia does alter DNA. I don't have the citation for that, however, I've read it from a couple reputable sources.
Who has some great sites/books that would be good personal resources in Anatomy and Physiology for us to refer to in our studies? Again, Wiki has some amazingly good pages that are easy to read - for a start.
-
[ 11-08-2009, 03:50 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
DNA is a protein, right?
Free radicals do a "number" on DNA too.
We make DNA from RNA, but there is one big difference. Oxygen.
We can't transfer a genetic code to our offspring via RNA. It has to lose oxygen.
Five carbon chain, ribose is the sugar.
Lyme disease is a VASCULAR disease. The classification/group is "H16". Bb looks to be located primarily in the basement membranes.
Look closely at a picture of where the basement membranes are:
Look at a list of things that include H16 in their molecular structure:
H16 in these things:
1.acetylcholine C7H16NO2 2.melatonin C13H16N2O2 3.Warfarin (blood thinner also known to knock off some forms of Bb) C19H16O4 4.usnic acid C18H16O7 (we talked about usnic acid on this board years ago) 5.Rocephin C18H16N8Na2O7S3 * 3.5 H2O 6.Camphor C10H16 7.A terpene from the bark of a tree: C10H16 8.l-methone C10H16O 9.Malarone (atovaquone and proguanil hydrochloride) ...the chemical formula for proguanil hydrochloride is C11H16CIN5 * HCL 10.Biotin: Its molecular formula is C10H16N2O3S There is some evidence that it may have antioxidant activity. 11.Taurolidine to treat bacterial infections, particularly Helicobacter pylori infections. Taurolidine occurs as a white to off-white powder having the molecular formula - C7 H16 N4 O4 S2. 12.EDTA (or ethylenediamine tetra acetic acid, also known as edetic acid or tetra acetic acid) is a synthetic amino acid having a molecular weight of 292.25 and a molecule formula of C10H16N2O8 2-Dimethylaminoethyl 4 chlorophynoxyacetate hydrochloride. trade names Cerutil, Helfergin and Lucidri Molecular Formula: C(12)H(16)CINO(3), HCL Synonyms:Centrophenoxine Hydrochloride; Clofenoxine Hydrochloride; Clophenoxate Hydrochloride; Deanol 4 Chlorophenoxyacetate Hydrochloride; Meclofenoxane Hydrochloride. Go here: http://www.worldhealth.net/p/aadr-centrophenoxine.html (anti-aging) 13.IPRIFLAVONE, 7-isopropoxyisoflavone. Used in Europe as Osteofix for increasing bone density, this isoflavone may be the answer for osteoporosis at 300mg twice a day. Appearance: A almost white powder. Formula: C18-H16-O3 14.3-INDOXYL PHOSPHATE Molecular Weight: 257CAS Registry Number: 3318-43-2Molecular Formula: C8H16NNa2O4P 15.ATP: Formula: C10 H16 N5 O13 P3 http://xplor.csb.yale.edu/xplor/hetero/ATP.html 16.MAP Formula: C10 H16 N6 O12 MG1 P3 Name(s): magnesium-5p-adenylyl-imido-diphosphate 17.The results show that H16 of hEGF, although not essential for mitogenic activity, optimizes receptor recognition by hydrogen-bond donor/acceptor interactions and may share this feature with H18 of hTGFalpha.
Human epidermal growth factor (hEGF)
18. Vitamin B1: C12H16 N4OS Thiamine...Valletta's patent...Mg pyrophosphate. Pyrophosphate is PPi which is an analog to ATP
19.Citrus D-Limonene - geeze...(I KNEW I should have brought some home from Capri!) Molecular Formula:C10H16 = 136.24
23. According to a detailed research on American peppermint oil by F. B. Power and C. Kleber (Pharm. Rundschau, 1894, p. 157), this oil contains the following substances: (1) Acetaldehyde; (2) isovaleric aldehyde; (3) amyl alcohol; (4) free acetic, and (5) isovalerianic acids; (6) pinene; (7) phellandrene; (8) l-limonene; (9) cadinene; (10) cineol; (11) a lactone (C10H16O2); (12) menthone; (13) menthol; (14) menthyl-acetate; (15) menthyl-isovalerianate; (16) menthylester of an acid, C8H12O2; (17) dimethyl sulphide (S[CH3]2). Substances 3 and 17 were additionally found in the laboratory of Schimmel & Co., in 1894 and 1896.
24. Chrysanthemic acid, C10H16O2
25. Ascaridole, C10H16O2
26. Oleum Chenopodii. Oil of Chenopodium. -- This volatile oil, obtained by distilling with water or superheated steam, is a colorless, pale yellowish liquid, peculiar, disagreeable odor, bitte burning taste, soluble in 70 p.c. alcohol (8), sp. gr. 0.967, levorotatory; contains a terpene-- pinene, C10H16, and a liquid oxygenated portion (C10H16O2), ascaridol. Chenopodium is a herb. It is called Mexican Tea. It has been used to treat roundworms. This is curious: We isolated ascaridol from a commercial preparation of Chenopodium oil and analyzed its activity against different tumor cell lines in vitro (CCRF-CEM, HL60, MDA-MB-231). Multidrug-resistant (MDR) counterparts of these cell lines express differentially the MDR-conferring ATP-binding cassette transporter genes MDR1, MRP1 and BCRP, respectively. We found that ascaridol exerts antineoplastic activity. The findings of the present investigation are the first hint that ascaridol may be an interesting novel candidate drug for cancer treatment.
27. Hypericinin , C30H16O8 in St. John's Wort
28.Valporic acid C8H1602 anticonvulsant
29. Cimetidine (Tagamet) C10H16N6S
30. AZT Formula: C10 H16 N5 O13 P3 (for AIDs)
31. � Nabumetone - C15H16O2Nabumetone - C15H16O2
And best of all:
caprylic acid = C8H16O2
BTW...hey, soldiers...what is in our Army's "H16" kits?
[ 11-08-2009, 05:19 PM: Message edited by: Marnie ]
Posts: 9424 | From Sunshine State | Registered: Mar 2001
| IP: Logged |
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Thank you Marnie
I was just trying to help out and try to come up with and idea..
as I notice many really want to know the basics of what the post is intended to mean and what they can get out of it to apply in their own lives and case.
Thanks for all the information and taking all the time to type out the long detailed posts.
It just feels like a shame to know that such a large percentage of those who read or try to read it will not be able to gain or take advantage of your great work.
That is what sparked my post..
We all are trying.. I know.. that is for sure not in question... : )
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
sorry, i have to skip the technical stuff.
over my head.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
So to sum it all up....
What's the plan? : ) Sounds like HBO can be a great plan of attack??
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I think there is more than a basic understanding of science necessary to understand Marnie's posts, if they are even completely understandable as posted.
I have taken the biology and basic (inorganic) chemistry (but not organic chemistry which is a separate class) that is required for people going into medical school, but I can't understand what she posts.
And the things posted here are not things nurses should be learning about in nursing school.
I think if it truly does make as much solid sense as people here are believing, Marnie should be able to put it into words that are understandable.
For example, I don't understand her point about all the chemical formulas above having "H16" in them. So what?
Either it's my misunderstanding for not taking organic chemistry, or it just doesn't make any sense. If it does truly make sense, I wish she would describe it in plain English, which should be do-able, if there actually is a point beyond noticing patterns.
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- There's not always a bottom line. Not always a "so, do this."
Sometimes, it is just sharing interesting details that have some connection or food for thought. Sometimes, it is just a lightbulb that goes off, adding to the collective insights.
We all have different styles and we all don't get something out of ever thread. That's okay. But even when I'm in a fog there is usually something of a good reminder for me or some other way to look a the puzzle.
The hope is that we get more LLMDs and stealth infection researchers around the world - so we all don't have to figure it all out for ourselves.
We should be focusing first on the basics of our care. Of course. I just sort of listen in on the conversation. I don't get it all but I know that is not likely, regardless of how simply explained it could be.
Sesame Street is probably not going to take this on. That's about my speed most days. But I'd hate to be reduced to that. I'm glad to see various approaches presented. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
massman
Unregistered
posted
Hoosiers I agree completely. I have a doctorate degree and have taken + tutored inorganic chemistry.
Have also taken 2 full semesters of organic chem. Of course it was 25 to 27 years ago.
Too many details seem too confusing for the average person WITHOUT lyme. And we are all mostly here because we DO have lyme.
So cognitive dysfunction (big word) = we don't get it (small, much more easily understandable word).
IMO if someone does not have lyme making them this way they really cannot understand how tough some things can be to get.
Communication is more of an art than a listing of facts which is mostly science. When I used to do a lot of public speaking I would practice with my 2 daughters listening.
They were about 8 and 13 at the time. If they did not understand it well (and it was for the general public like in Barnes + Noble and Borders) we would redo it until it was easily understandible.
IME people need to understand things before they will act on them.
IP: Logged |
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
"cognitive dysfunction" Yes!
Which make it really hard for me to get thru to many here...though not everyone (some here are family members who do NOT have lyme).
And not all lyme patients have "neuro lyme".
It is very hard for many of you to learn.
Lyme disease impacts many neurotransmitters, but
especially acetylcholine
which functions in the brain AND body.
ACh (acetylcholine) is involved with synaptic plasticity
***specifically in learning***
and short-term memory.
* (end of neuron)....acetylcholine......*end of another neuron.
Acetylcholine is a chemical "helper" to transmit a signal from the end of one neuron to the end of another.
Very general explanation.
It is made, used to help transmit a signal, broken down, made, used to transmit a signal, broken down... at incredible speeds all the time.
To be MADE is a problem if we don't have the nutrients to do so. If they are being "stolen" from us.
Animation (video to watch) and explanation below it here:
I did NOT learn this in nursing school. I've been studying and learning on my own for the past 9 years.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- That video link is a nice visualization tool. Yes, learning is really a huge challenge. Like molasses in my brain most of the time. I'm so glad to be reminded of the importance of Acetylcholine.
BIOCHEMISTRY OF LYME DISEASE: BORRELIA BURGDORFERI SPIROCHETE / CYST
Excerpt:
Dietary Supplements in Lyme Disease
One of the known actions of the Lyme spirochete toxin is to diminish the release and availability of the neurotransmitter acetylcholine, a simple organic compound (see above for chemical structure).
This substance is biosynthesized by the body as required in nerve activation and transmission.
Supplementation by the precursors of acetylcholine synthesis would be of value to Lyme patients since they have a deficiency of this substance. (See Listing 1.)
Listing 1: Dietary Supplements Increasing Acetylcholine Synthesis Improving Neurologic Function
If the inhibition of acetylcholine release were total, Lyme patients and those suffering from food poisoning would not be able to move; they would be completely paralyzed.
Since the blockage is only partial, any increase in the amount of available neurotransmitter would benefit anyone experiencing neurotransmitter blockage.
For this reason, dietary supplements increasing the amount of available acetylcholine have been shown to benefit Lyme patients.
Acetylcholine Formation
In Chart 3, we can see phopsphatidylcholine is a constituent of lecithin, a well- known dietary supplement. Acetylcholine is simply choline to which an acetyl group (CH3CO-) has been attached.
Lecithin is the source of choline, and acetyl-L-carnitine (ALC) is the source of the acetyl group.
Carnitine is synthesized by the body and requires several factors, including the amino acid lysine and vitamin C (ascorbic acid).
The supplement known as SAM (S-adenosylmethionine) supplies methyl groups (CH3-) to lysine, forming trimethyllysine. This compound is further processed, requiring additional vitamin C, resulting in carnitine that supplies the necessary acetyl group. 8,9
--------
This gets further complicated for those in whom the methyl process is compromised. See threads by TerryK about that. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
massman
Unregistered
posted
Specific nutrition for sure. BUT....boy have I gotten in trouble here and on other sites when explaining the difference between vitamins from true food sources and the DEAD partials that many pros and public think are vitamins.
There is a difference between living foods and dead chemicals, isnt there ? ? ?
IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I still don't understand the significance of 16 Hydrogen atoms.
Would anyone care to explain what they have to do with any of this, besides coincidence?
It's being laid out here, in list format, then there is no significance attributed to it.
How can we take something seriously if it is just a bunch of chemical formulas, with no explanation as to significance or why we should care?
I think people are frustrated because they don't see the significance here, but until someone says what is so significant about this, I'm not sure anything is.
Right now it just seems like random tidbits taken off the internet, with no link.
posted
Good points Hoosiers.
Posts: 872 | From New York City | Registered: Jun 2008
| IP: Logged |
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
I want to know why our Army has "H16" kits and what drug (?) is in our Army's "H16" medical kits.
For some reason...16 hydrogens is very important as well as a few other elements.
But it is how all the elements are ARRANGED in a compound that makes the difference as to how they work in the body.
In lyme, caprylic acid C8H16O2
may indeed be absolutely critical!
I'm going to try to simplify:
Caprylic acid -> in the liver -> a very special ketone that inhibits an enzyme called ACC2.
Inhibiting that enzyme
shuts off fatty acid synthesis.
And guess which pathogen is absolutely dependent on fatty acids...
Yup...Bb.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Marnie,
Aren't people dependent on fatty acids too?
So how do you know that it's possible to consume enough caprylic acid to shut down fatty acid synthesis of bb, thus killing all of the bb, before you shut down enough fatty acid synthesis to kill the person?
That is the whole question. Like saunas. The heat would eventually kill all bacteria, but it just isn't possible to get "that much" of a "good" thing.
Also, I understand that it is how the molecules are arranged, that determines how the chemical works. That is why I was questioning the significance of H16. It seems to be irrelevant, because it isn't merely about quantity (with regards to hydrogen atoms or any atom in a molecule), it's also about structure. Right?
I'm not trying to be negative, I am just asking some of the questions that I think need to be asked.
On an unrelated note, I was looking up the structure of some of the chemicals on your list, and I think Vitamin K is actually C31H46O2.
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
posted
"...I think if it truly does make as much solid sense as people here are believing, Marnie should be able to put it into words that are understandable..."
Well said. I would take this a bit further, and I've commented on Marnie's posts recently:
- almost all are cryptic, incomplete or misleading (e.g, post(s) about ridding of biofilms in which I commented).
- this issue has been brought up repeatedly. It takes a lot of energy and will to bring this up time and time again; so people must REALLY care about this issue.
I would suggest that the (new & highly motivated!) moderators reconsider the community guidelines; and perhaps draft a new one that addresses these kind of issues (cryptic, confusing or misleading posts).
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
| IP: Logged |
For those who lack the general background to understand these topics, please quit kicking yourselves for inability to understand what almost always amounts to nothing more than nonsense.
For those who fail to notice, Marnie is cutting and pasting from other sources, which she seldom even credits. Unfortunately, it is easy to assume it some how applies because it sounds scientific, especially when it's strung together.
Nevertheless, Marnie tends to cut and past things together in a nonsensical fashion that demonstrates a lack of background with any the regard to basic chemistry, biology and biochemistry.
It might cut down on a lot of misleading information if the moderators here required Marnie to cite all of her sources so patients who wish to follow the links could readily ascertain whether or not her wild hypotheses are even remotely based on research that is in any way applicable to the topic of Lyme disease, or to the topics she creates. Also, that type of requirement would at least curb much of her blatant plagiarism.
I used to try to counter her mistakes and correct them, but it got to be a huge waste of time because she just doesn't argue logically and she out posts anyone who dares argue logically with utterly inapplicable nonsense, which is strung together in a way only Marnie can.
There are very few medical discussion forums where she would have been permitted to behave this way. I still can't fathom why it's been allowed to continue here for so many years. It may be because she has run off, or simply exhausted those with the scientific background to attempt to counter her.
It frightens me to think that some patients take her posts seriously or that they would consider printing this in an attempt to make their doctors read it. That she and others actually seem to believe there are scientists lurking here, who read her topics in hopes of learning from her, is even more disturbing because these types of posts discredit the serious topic of Lyme disease and all of the patients who suffer with it.
While I wish she would quit posting nonsense, I would be happy if she were required to give citations and links for the real science that she is borrowing and stringing together. At least that would stop some of the plagiarism.
edited to say: I appreciate the fact that Marnie went back in and added links and citations to her post. I hope she will continue to do that each and everytime she cites or quotes a source.
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- FACTS cannot receive a copyright. Facts of science cannot receive a copyright, either. Much of what Marnie posts are basic - or complex - facts or processes that do not have a copyright. Links to sources for further details are nice and sometimes those are posted.
So, these posts are complex, hard to read? Maybe not in your style? Well, then move along. Take what you can that may be of benefit. There's no need to beat up on someone if their "teaching style" is not to your liking, especially when you are not paying admission price.
Last week, someone else was being bashed. Someone new this week. Very sad.
If you don't like the way one author writes, read something else. Buy a different book. No need for bashing just because it's not your style.
If all posts were required to be totally coherent or instantly and completely understood, few would remain.
It's the ugliness behind this that should be banished, not someone doing the best they can to share thoughts and processes. Presentation styles vary widely. Not everyone has a golden pen. But we could all open our hearts a bit more here. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
-
If I see something that is blatantly incorrect though, I am going to say something about it.
Marnie listed a long list of chemical formulas, all containing "H16," and inferred that these all share something special, yet she can't explain what.
I feel it's my responsibility, as someone who has a basic understanding of chemistry, to point out the potential pitfalls to others in what Marnie said.
The fact that they all have H16 in them is not relevant, and I would hate for someone to think that it is.
I hope it was clear that what I was saying is not bashing an individual, but I was trying to ask intelligent questions, and give my perspective on the material that was posted.
posted
Keebler, sorry we disagree here. This is the ONLY thing I've ever read from you where I disagree...I know you've helped so many people so I am sorry to be blunt. But this is not about you or me, or what we think, right? It's about what so many other people have said for a long, long time.
Question: If the self-appointed teacher is confusing most of the class, most of the time, is it OK if we raise our collective hands? And if that doesn't work, then what?!
New moderators, pls get together and fix this persistent problem!
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I think she should be able to post whatever she wants, but we should have the right to scrutinize it.
It would be nice though, if she had some kind of disclaimer for those who decide to try to interpret her posts themselves.
Since they are so hard to interpret, it only seems fitting.
My fear is that someone will take something out of one of her posts that is NOT what she was saying, and it will end up backfiring with regards to their health.
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Do we get college credit for reading this post? Posts: 2232 | From USA | Registered: Aug 2009
| IP: Logged |
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Phew! Is it getting hot in here???
I think I'd like to take this back to the intention of the original post - that for those of us with cognitive issues, we find Marnie's descriptions overwhelming, yet compelling.
If Marnie could sum up at the beginning of her posts in simple language, and then prove her argument, then we could at least contemplate along the same lines and draw our own conclusions which we can contibute to the dialogue.
As far as Hoosiers commenting on the right to correct where error is found, I think what we have here in Marnie is a very important message about how we could be harnessing all our brain power and time which is devoted to "cracking this nut".
I think what we need to do is enter into a dialogue with Marnie - Hoosiers saying, "What about this" or "I don't agree with that", Marnie responding. Others replying until we can come to our own conclusions.
How many of us are highly competent and self-motivated people with a background of successful careers? We have a lot of firepower here, and I'm betting we could find some real answers if we put our heads together.
And I will re-iterate: in order for us to harness our full potential, Marnie, or whoever else would like to take a crack at x y or z question needs to give the brief in plain English at the top, followed by the detailed analysis.
We are some pretty swift cookies on here, cognitive issues or no, who have spent a considerable amount of energy contemplating the workings of Bb, and with a brief in hand and the history of our contemplations, I'm convinced we will be important contributors to new understanding and answers surrounding the cure of this disease.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
| IP: Logged |
posted
I actually enjoy (with much frustration thrown in) reading Marnie's posts even though I do find them stating facts with no substantiation.
I enjoy them because they cause me to think of another possible avenue of treatment. So, I weed through the cryptic and research the rest, i.e., Magnesium is always mentioned in her posts--what is so important about Mg? etc.
I would love it if the posts weren't so difficult to read and were more to the point, less cryptic--and I don't have Lyme and I consider myself fairly intelligent--but I just figure that Marnie is one of those "brainiacs" who can't simplify, or rather she truly thinks she IS simplifying!--I have a son like this, so sorta "get her"!
But, I agree, validation of the statements made with links and citations so that we could further our own research would be wonderful!
Posts: 648 | From northeast | Registered: Feb 2009
| IP: Logged |
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
As well H51 is right there now pointing out a lot that got me thinking. I am do worry too about "believing" in all the logic. I mean I want to. I guess because it is presented in such scientific terms there is a general natural response to think it is "accurate".
Thanks for posting that point.
Lastly. what is hitting my nerve lately is that we are not allowed to talk about things as intelligent adults wanting to resolves "any" issues as a group... that it is quickly named "bashing" And it is Keebler that keeps saying that over and over in various posts in a manner that now brings "a new" element into the picture that was NOT there to being with.!!
For me the new focus not becomes assumed and part of the discussion when it does not exist.
There have been many more points added to this post that i even thought of that are important.
I think it is not too much to say as a group something can be worked through and agreed up forward?
I sure would hope so and I see no reason why not?
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
| IP: Logged |
Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
I understand what everyone is saying here, but Marnie should not have to apologize for what may be her unique personality. Her posts are not required reading but there to be read according to users' own volition.
Her posts should not be held to a higher standard just because she uses a different lingo.
Personally, I never delve too far into her posts to know what sources she may use but she does seem to have a legitimate understanding of certain biological processes.
She is trying to help in her own unique way.
``Think like a wise man but communicate in the language of the people.'' - William Butler Yeats
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
| IP: Logged |
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
I agree Lymeor...
The post was never started to ask her to apologize or nor to put her down.
Just wanted to express I wish there was a way to make it so we could all gain more from the posts.. Esp since she obviously puts so much time and effort into them.
I am sure she would love for us to be able to get more from them.. She is trying to help out. its obvious.
I was just kinda sad to think about the large proportion who can not even grasp the lingo or the concept and therofore gets nothing out of them.
So.. if we did not point it out she would never know what we are thinking ...
And I really would like to follow along better..
If that is nothing to be done.. then.. I and we will have to do the best we can or skip it or ask questions like we have been... for a long time.
But it is a shame....that so much goes by without the benefit .... of gaining knowledge.
And its not as simple as look up each word on wiki. Like others pointed out there is also lots of other reasons that it is hard to figure out.
But hey.. if there is no resolution to this.. So be it..
Anyone want me to delete this thread. Speak up.
I will respect the wishes of the majority..
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
What would be helpful is to hear from people who actually DO what Marnie suggests. Few, if any, seem to report back. I wonder how useful the strateies are and this would be a way to get good feedback. Most were dirt cheap suggestions.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
bettyg
Unregistered
posted
spring,
did you EVER send marnie a pm talking with her about this subject BEFORE posting on a PUBLIC board?
why not ask marnie in a pm if SHE WOULD LIKE THIS DELETED OR NOT?
IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I was the one that de-railed this post. I just want to say that I did not mean any harm in it. I'm glad things stayed civilized and respectful. At least I think they did!
I think as long as everyone realizes the things suggested by Marnie need to be approached as experimental, everyone should be okay.
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
posted
ok,, gonna jump in here for a sec and speak to all on this site. just wanna say, thanks to ALL who do their best to share what knowledge has been gained with the rest of us.
bottom line is we are ALL trying to learn, understand,etc. most of us HAVE HAD to take much of our health issues into our own hands. and lots of us on here DO come from educated backgrounds, etc.
I am a nurse but i dont always understand what folks post (not only marnie by any means !)... so i do look into it, look it up. i do have a file i have collected and on better brain days take stabs at it. I have things i have said, contributed and dont always cite a med-surj book to back it up. for me, somethings are just plain/easy medical knowledge because of my background. does not mean i am making it up, or plagerizing. just trying to help others is the honesty of what/why i WILL post.. to try to help someone else. .
Thank you marnie, keebler, and countless others for doing YOUR BEST to help educate those of us seeking info !!!!
better to support each other here, we all get enough discouragement in the rest of our lives dont we?? we are learning, even our Dr's are learning. build each other up, offer support, education... this is what we are all looking for here on this site... isnt it??????????
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
| IP: Logged |
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
MY3BOYS, I agree with much of what you said and this topic has come up before and on more than one occasion.
Editing this post as I made a mistake and mixed MY3BOYS up with our new moderator SIXGOOFYKIDS. Portion in brackets obviously should not have been addressed to MY3BOYS but IMO is still a valid point.
[As a moderator, you must be aware of the fact that these kinds of postings are causing an unhappy and frustrated feeling for many in the membership.]
Yes there are many here from all backgrounds and many of us have had to develop knowledge in areas we would otherwise not have to because of the nature of this illness.
I don't think that those of us here who have voiced their opinions don't appreciate the work that is being shared. In fact, they would love to be able to appreciate it and understand it.
I think the KEY issue here is that the majority of the membership cannot understand it, as it is way beyond the comprehension of most and mostly because of the manner in which it is written.
I can read a medical abstract and the summary helps me get the main point of it, while not understanding it in its entirety.
This is not the case here and many have expressed this in this post and a previous post that got out of control and was edited and sanitized. This is not a new concern among the membership but one that has been dragging us down with discontent.
In the past, many of us have asked if a summary in plain language, could at least be included for the many who would like to learn from the information that is being dispensed but that came to no avail. The needs and desires of the many are being ignored.
I expressed this opinion then and will now. If a small fraction of the membership can understand what is posted because it is written in a manner that is beyond the grasp of the average member on this site, how is it helping when the "many" are in the dark and cannot understand it?
We are not talking about a person on this site who does not take the time to understand this illness and research and learn but about postings that are incomprehensible to those that lack the background to understand the way they are written.
I personally feel that these posts alienate and frustrate many, as they are desperately trying to get well and feel they are cut off from understanding what may be valuable information.
And if most cannot comprehend it, how do they know if it is valuable information or not? That creates further frustration.
I feel that when information posted benefits only a very small percentage of the membership, it is not fair, considerate or keeping within the spirit of the Lymenet community.
How can we accomplish this:
"better to support each other here, we all get enough discouragement in the rest of our lives dont we?? we are learning, even our Dr's are learning. build each other up, offer support, education... this is what we are all looking for here on this site... isnt it??????????"
when the posts in question do the exact opposite for the majority of the members here?
I think you should reconsider your statement above and listen the those who have voiced their opinion in the past and continue to do so.
Couldn't some concession be made, such as a summary of the post, so we can accomplish what you quoted above.
[ 11-10-2009, 06:59 PM: Message edited by: Abxnomore ]
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Quote Marnie(It is very hard for many of you to learn.
Lyme disease impacts many neurotransmitters, but
especially acetylcholine)
I had been accepted to go to college. Paid for by work because they sold to overseas co. And I
could not go because now I have a load of trouble focusing. I am very disappointed in Lyme in so
many ways. But I think at least trying to help ourselves when others would not, is all our
goals. Maybe some great history will be found right here. Keep looking!
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
posted
In essence I agree with Hoosiers, Abx, and Cold Feet. In the past I have said much the same about Marnie's posts. To me they make no sense. Do they make sense to anyone -- I don't know.
But in thinking about this, a few questions come to mind.
Would Lymenet be a better place without these posts? Would it be more fun? More interesting?
I don't think so.
I think a lot of the fun is in the different opinions and viewpoints, the different voices, often extreme, which spur discussion and debate -- and sometimes pretty entertaining threads. Many want to sanitize this out. But I think it's what gives this board life.
Face it -- regardless of all the chemical names and abbreviations, it should be understood that Marnie is not going to "cure" Lyme with her posts. None of us are. Though we may stumble on things that help, that make it more bearable, that get a select few into remission. But the answers to a cure are way beyond us when we don't even know what the questions are yet. So we may as well enjoy each other as much as we can.
Yes, it would be nice if Marnie would form some of her ideas into clear paragraphs, letting us understand her meaning and leaving us to judge its value. But based on history this aint gonna happen.
So I ask: would this be a better place with her (and those like her) or without?
Posts: 845 | From Eastern USA | Registered: Jul 2006
| IP: Logged |
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Don't be silly; it is better with Marnie!!!
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
| IP: Logged |
I think you may have missed my point. I was saying that it would be be better WITH Marnie.
Posts: 845 | From Eastern USA | Registered: Jul 2006
| IP: Logged |
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Lyme Brain! I thought you were asking a question!
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
| IP: Logged |
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
It's not a question of will it be a better place with or without her and few that I know of would not want to learn and benefit from her research.
No one is asking her not to post or to leave the site. THAT IS RIDICULOUS.
People are just asking for her to write in a manner that the majority can understand.
The point, as I have already made, is that few can understand what she posts because of the way it is written.
Wouldn't it be better if the posts were written so that they were comprehensible to the non scientific person,given that this is not a research site and then more of us could understand it and feel included instead of excluded?
Sure there will still be some who can't understand it even if she wrote in a manner that was understandable, but if it was written in text MOST would be able to learn something from it and it would change the spirit of this site.
It should be about helping the majority, not the minority of the members considering what the purpose of what this site is about.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Many posts and threads here are not at all about helping the majority of members.
Not addressed to any one person, but to all of us. How about this as a general practice when writing? When we check our text that we also check our attitude.
Got judgement? Got attitude? Would we even recognize those things? If we feel entitled, like someone owes us more, that is a clue.
No one here owes us a "Cliff Notes" approach. Questions can always be asked. Discussion takes place. If it's either over my head or just not up my alley, I can stroll to a different avenue.
Right now, some of the attitude here sure has me thinking I need to get far, far away from here. Words may appear to be fair but the attitude sure is not. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Keebler,
I'm not finding your post constructive, when there is clearly concern and discontent in the membership about this issue and has been for a very long time. Underlying discontent and a feeling of not being heard often comes out "with attitude" thou it does not help resolve things.
Let's focus on how we can serve everyone's needs better and come up with a better solution to making the information more comprehensible and reader friendly.
"No one here owes us a "Cliff Notes" approach." True, but who are we benefiting if only a very small portion of the membership can understand what we post?
We don't want Lymenet to be about attitude or ego. Neither works in the spirit of cooperation and community.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- There is no "issue."
This is little more than material for a made-for-TV modern day adolescent bullying event by a few disgruntled individuals, carried over from last week's rumble. Who's next, eh? Not a safe environment these days. -
[ 11-10-2009, 06:59 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
I don't believe you are correct but you are entitled to your opinion, as we all are.
Let us hear and "listen" to the rest and let them not feel intimidated to make their voices heard, as long as it is keeping within lymenet rules.
No personal bashing but simple voicing of opinion.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Boy I'm glad you are not here. I would have to give you all a big lymie wet kiss. LOL
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
posted
Please keep it nice, folks, I don't even know where to begin editing this thread. Maybe you could all think about what you've posted and whether it's respectful of others and edit your posts accordingly? (We mods will be looking through it later. I think we'd all like it better if we edited our own posts ).
Marnie has been clear that she intends her posts to be for the medical community. We are all free to post what we wish as long as it's within the Lymenet rules ... and taking into account being respectful of others.
If it continues to cross the line, I will close the topic. Thank you for your consideration.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
bettyg
Unregistered
posted
quote:Originally posted by Abxnomore:
MY3BOYS, I agree with much of what you said and this topic has come up before and on more than one occasion.
As a moderator, you must be aware of the fact that these kinds of postings are causing an unhappy and frustrated feeling for many in the membership.
so abx is staying my3boys is 1 of our new moderators....
i feel abx is out of line on her posts. end of subject.
IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I never said I think Marnie should change her style.
I am just trying to warn people that from an outsider's perspective, her posts probably aren't as infallible as they seem, so I would caution anyone from following them as medical advice, or trying things they don't understand.
That normally goes without saying, but lately I have seen a lot of questions directed towards her specifically, where she will give an answer with very little logical flow, and the person will end up guessing what they think she is saying they should do.
I just wanted people to realize there are holes in some of these posts. I think that is the rational thing for me to do as a person, when I see something posted here that doesn't make sense.
I asked her some logical questions about things she is suggesting people do, partially for their sake, because they might not think to ask them, and partially out of my own curiosity, because things don't always seem to add up.
I think that is the point of a forum, to be able to ask someone questions about what they are saying.
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
massman
Unregistered
posted
Why such an uproar when many are posting that her posts are interesting and they want to really understand them but they can't ?
I do not see bashing + disrespect here, I mostly see some posting "please dumb it down for us so we can understand it !" I have certainly asked for that.
IP: Logged |
posted
I don't see a problem with asking her what they mean. Personally, I'd like to understand her posts better, too. However, as long as she's following forum rules, if she chooses to not post in a manner that the majority of us understand, that's her choosing. We cannot tell her she has to post in layman's terms or not post at all.
Bettyg, I don't even know if she's a moderator because the other two mods have changed their names. If they wanted everyone to know who they are, then they would have kept their names as I did.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
posted
I personally think Marnie posts can be interesting at times (and at times they feel like random quotes from random papers, with all verbs and adjectives stripped off) , but major problem is they are not applicable for anything but theoretical speculations
Its one thing to speculate on paper about a few specific biochemical pathways (out tens of thousands!) and completely another to actually implement it in working treatment .
Anyways I think more information is better than no information , regardless where it comes from
Posts: 856 | From MA | Registered: Jul 2009
| IP: Logged |
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Apparently I mixed MY3BOYS up with our new moderator sixgoofykids . My apologies.
I wasn't trying to act out of line Betty. It was an honest mistake. You seem to assume a lot about me.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
| IP: Logged |
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
I have hope that Marnie, Gigi and others will someday stumble on the answer..We will not all understand but I do think she made a few good stabs at trying to dumb it down..I was even able to remember my anatomy and physiology day of acetylcholine / synapses..I think I misspelled it however. Spelling is not good for me. Sorry..Keep it up Marnie..lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Abx said... "Apparently I mixed MY3BOYS up with our new moderator sixgoofykids."
Either way, 3 boys or 6 goofy kids, that's a mess of fun!
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I just thought of something because of this
conversation. LOL You know how many describe the
incidence of joint pains, etc at sites of old
injuries???? Well....when you have a injury, the
body tries to repair that boo-boo. As a result
calcium is deposited by the repair mechanism.
Bb loves Calcium.....
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Yikes.
Ok.. Massman said it perfectly
Massman said,
"Why such an uproar when many are posting that her posts are interesting and they want to really understand them but they can't ?
I do not see bashing + disrespect here, I mostly see some posting "please dumb it down for us so we can understand it !" I have certainly asked for that. "
This thread is SIMPLE and yet it turns out to be off subject and taken places that are not productive.
I also feel "words" and "intent" were put into my mouth and I DO NOT appreciate it.
I seem to have to repeat it again that this is not PERSONAL nor an attack on Marnie. The opposite. I wanted to have more of her info if it would help me but I did not KNOW it if would or would not because I could not understand it how it was being presented.
SO.. I really do not feel that what was said was such a big deal.
Its a compliment to her if anything..
I would be flattered if someone posted the first post here about me.....I figured maybe she was not that aware maybe of how difficult or how many of us wish we could get to the information.
But Oh well.
I give up on the idea.. But as I am sure she has read the post she can decide if she would rather more of us have that opportunity or not..
IT is 100 Percent up to her !!!!
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
| IP: Logged |
massman
Unregistered
posted
I have done a lot of public speaking in my career. Weekly new patient education classes, Barnes + Nobles, Borders, large FM/CFS support groups (75 members at one meeting).
If things are not presented at a level that the crowd can understand well, it is a waste of the presenters' and audiences time. A sad but true fact I learned the hard way.
Or a great feeling when (in person of course) the presenter sees + feels the "light bulb go on" in the head of some in the audience.
IP: Logged |
I'm amazed, a flame war that doesn't include me, I feel left out.
But, this concerns me:
Sixgoofykids:
quote:If it continues to cross the line, I will close the topic. Thank you for your consideration.
I am not seeing this topic crossing any lines. There are some issues that members have opposing opinions on but are discussing respectfully and maturely.
These are adults working out some differences in attitude, approach, and philosophy.
If the moderators will let the adults handle their differences, then we'll probably all be better for it.
This hasn't decayed into name calling and cursing, so let this conversation continue. This is a subject that needs to be aired out.
I really don't understand the quickness the moderators have shut down some topics.
James
Posts: 872 | From New York City | Registered: Jun 2008
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Six has gotten power hungry in her new position James. KIDDING!!!!!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
And JUSTIFY THAT STATEMENT! Oh wait, that was from a different topic--never mind.
Posts: 872 | From New York City | Registered: Jun 2008
| IP: Logged |
James, that's why I didn't shut down the thread, I thought the discussion could be continued. I just saw it starting with the pattern that other threads have taken when they took a turn for the worse, so I just put in a reminder. In the end, you see, I didn't edit out anything, but I do think people were walking the line pretty closely, as springshowers has mentioned, some of the words were getting ugly towards some of the people. The thread was brought to my attention by two different board members, so I had to take a look at it.
I see no problem at all with asking Marnie politely to dumb down her posts so that we can understand, but when she says no, it's really the end of discussion.
Also, people have brought up a couple times now that maybe the moderators can change the rules (we were asked to review them in this thead). The thing is, we aren't here for that, the board owners create the rules, we just moderate the board to be sure they are being followed.
We are fine with letting adults hammer out their differences, but on the public board, it needs to stay respectful, that's all.
On the "other" thread from last week, I was going to shut down the thread to let everyone cool off, then reopen it. Unfortunately, my internet went down right after my post until the next day.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Have you ever taken a class and sitting there, did not catch onto what the teacher was saying, but
others in the class WERE catching on?
Did you raise your hand and ask the teacher to clarify what he/she was saying or
did you drop the class?
SOME people here...a FEW...are learning,they are beginning to understand and are also piecing this puzzling disease together.
When I FIRST came to this board, I also bought and read 2 lyme "primer" books...Karen's and another.
There is huge problem because so many come to this board without basic knowledge about lyme disease AND basic knowledge about the spirochete.
And many are too sick and too tired to read and learn. They want a fast answer and it is not that simple!
Thank you Keebler and others who "get it".
I believe lyme patients CAN and have recovered...completely.
Finding the *safest*, most effective, and least expensive cure for the masses is critical.
"There are people who take the heart out of you, and people who put it back."
- Elizabeth David
P.S. Abxnomore, I feel keebler's post WAS very CONSTRUCTIVE because she linked "primers".
Which certainly is opposite YOUR view stated above:
"Keebler,
I'm not finding your post constructive, when there is clearly concern and discontent in the membership about this issue and has been for a very long time."
Posts: 9424 | From Sunshine State | Registered: Mar 2001
| IP: Logged |
posted
I think you are correct Marnie that finding a safe, effective, and affordable cure is critical. I am proof that you can recover from being very, very ill with Lyme.
In those classes you describe, I just memorized everything but understood little (like finance in college, a requirement, and I got a B+, but didn't get it).
Maybe a compromise would be, at the beginning or end of one of your posts to tell people what they are looking for, ie, tell the conclusion so someone knows what they're looking for as they're reading through the post.
Just an idea, post as you like, I just know that would help me.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Talking about people in this manner is extremely unsettling. It's the gossip factor - putting someone on the spot.
Can't we have some threads that are over our heads? That's fine with me.
You can always ask someone to clarify. Last week's post and this one are so disturbing because of the gossipy MANNER in how it's done. These people could have been sent a PM, or a question asked in particular threads for a watered down explanation.
But to start threads actually about someone in particular, that is what is so distasteful. It's just rude. It's not even just talking behind someone's back, but not caring that you know they'll read the notes left on the bathroom wall.
There are different styles. We won't grasp everything and everything should not have to be written for just those of us in brain fog. I'm hoping others who can think on different levels will continue working as best they can.
In this age of twitter and Entertainment Tonight putting everything everyone does right out in public, we have to be careful not to assume that is good manners. If we stoop to the level of how people conduct themselves in the gossip shows, we will have fallen far.
We asked how to better understand, suggestions were given, message was received. Why continue the gossip? Unless to perpetuate negativity and hurl barbs?
Message was received by Marnie. She will simplify what she can and separate out the complex posts for others who are wanting that. We can also make an effort by looking up basics if we don't remember a concept.
But, there is not a bottom line or instant remedy to be found in most of the posts and it's unfair to expect such.
Problem solved. But I'm not sure the attitude is - or the feeling of entitlement to gossip right out in open like gossip-television. We have the ability to rise above that kind of behavior.
We also can rise above and let stand complex material, taking what we can and letting those who want to take it further do so. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Roll Eyes]](rolleyes.gif)
![[Wink]](wink.gif)
![[Cool]](cool.gif)
![[Smile]](smile.gif)
Few, if any, seem to report back. I wonder how useful the strateies are and this would be a way to get good feedback. Most were dirt cheap suggestions.
![[tsk]](graemlins/tsk.gif)
![[lol]](graemlins/lol.gif)
![[Big Grin]](biggrin.gif)
![[lick]](graemlins/facelick.gif)
Printer-friendly view of this topic