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» LymeNet Flash » Questions and Discussion » Medical Questions » Response to comments and questions before a break

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Author Topic: Response to comments and questions before a break
Marnie
Frequent Contributor (5K+ posts)
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Abxnomore, you said above, "It seems that you are the one who wants to talk about NB and try to discredit ICHT in any way you can."

I did not bring up the subject of DNP (which is in a class with cyanide) or ICHT.

You did!!!

( in your post on 14 August, 2009 05:55 PM) in reply to my saikosaponin-d post the day before.)

Because DNP IS still available (``DNP is used by bodybuilders, often illegally, to rapidly lose body fat before contests'' -

http://www.chemistrydaily.com/chemistry/2,4-Dinitrophenol,

...IMO persons should be aware of the potential dangers so they don't try to get DNP illegally and experiment on themselves.

DNP alters the electrolytes of dogs given DNP:

http://www.springerlink.com/content/w154677355801717/

Electrolyte shifts in rabbits given DNP:

http://www.springerlink.com/content/j53546437g712138/

DNP led to death:

http://bja.oxfordjournals.org/cgi/content/short/102/4/566 = British Journal of Anaesthesia 2009 102(4):566-567

My post was in regards to a saponin... a different one compared to TOA free Cat's claw - which was once thought to be a lyme CURE (TAO free Cat's Claw):

http://www.samento.com.ec/sciencelib/4lyme/curinglymewsam.html

TOA-Free Cat's Claw Experimental Group
100% of patients experienced marked clinical improvement; 85% were seronegative for Lyme disease at the end of study.

http://www.springboard4health.com/notebook/health_lyme_disease.html#breakthrough

I know seronegative is a hard word to accept/believe. Since we make antibodies to Bb's outer surface proteins (OSPs) and that is what is usually measured, the absence of antibodies doesn't necessarily mean the CWD (cell wall deficient) form of Bb is not present.

But that IS step #1 in destroying a gram negative pathogen...destroy the cell wall or prevent it from forming in the first place.

Abxnomore, you asked: ``Is it fair to post information, especially with the subject lines you use, that leaves most of the members at a loss to understand it? It seems like a tease to me, almost cruel when so many are struggling so hard looking for the way to get well.''

What should I have done? What would you have me do ... simply state saikosaponin-d MIGHT cure lyme in some persons? And leave it at that? Forget the "how and why" this might work?

I KNEW most lyme patients would not understand the ``hows and whys'' this might work

which is WHY I asked lyme patients to please share this information with his/her LLMDS who would understand.

I would expect the INVESTIGATORS of the TOA-free Cat's Claw study linked above would be interested, esp. Dr. C.

There ARE people on this board with medical backgrounds. Some, I hope, still want to learn, to exercise his/her mind, to understand as much as we can about this pathogen. There are/have been nurses, chemists, biologists, veterinarians and dentists, etc. on this board.

If we don't understand a pathogen, what makes it ``tick'' (no pun intended), how can we possibly figure out how to destroy that pathogen?

Bb is like the ENEMY...

Where is he located? What are his needs and how is he getting those needs fulfilled? Who is he recruiting to help out?

We have to know the above and a lot more to figure out a way to destroy the enemy...Bb.

I've been studying this pathogen for 9 years practically nonstop because I wanted to know WHY antibiotics failed my sister (who was misdiagnosed and given steroids).

I BELIEVED in antibiotic therapy. Slowly, very slowly, I began to understand the enormous complexity of this microscopic - sized enemy.

This knowledge enabled me to see how various treatments MIGHT work. And it took a LOT of time to evaluate the safety and effectiveness of the various alternative treatments (Rife, far infrared, HBO, etc).

Understanding the enemy is paramount to finding a cure/cure to rid "him".

Re: Cycloferon - it was mentioned by someone - note that was administered

in conjunction with chemotherapy.

JamesNYC, you said, ``I'm sorry. Not only is this basically incomprehensible, it only refers to anti-inflammation.''

No...read just the first two sentences carefully...what it is

then what it does.

Here's a repost:

``Saikosaponin-d (Ssd) is a *triterpene saponin* derived from the medicinal plant, Bupleurum falcatum L. (Umbelliferae).

(That's what it IS.)

Previous findings showed that Ssd exhibits a variety of pharmacological and immunomodulatory activities including anti-inflammatory, anti-bacterial, anti-viral and anti-cancer effects.''

(That's what it DOES.)

Vermont...you asked, ``don't we want T-cell activity for our immune response to germs?

Answer:

``Our findings are that the NK T cells are critical to preventing the chronic inflammatory infection that causes Lyme arthritis and they participate in clearing the bacteria which cause it,'' said Mitchell Kronenberg, Ph.D., the La Jolla Institute's president & scientific director and co-senior author on the study, which used a mouse model of Lyme disease.''

http://www.amc.edu/pr/PressRelease/12_04_08_L.html

NK cells are natural killer cells. They normally knock off pre-cancerous cells. About 4 or 5 per day in all of us.

Unfortunately, those aren't the KIND OF T CELLS activated by Bb's proteins.

Gamma (looks like a ``Y'') and delta (sorta looks like the number 8, but the top of the ``8'' isn't closed) are the T cells triggered.

Bb triggers gamma delta T cells.

Source:

http://www.jimmunol.org/cgi/content/abstract/161/10/5762


Lonestartick, your comment: ``Marnie is cutting and pasting from other sources, which she seldom even credits.''

Is not true!!!!!! Seldom credits?!!! How can you possibly write that for all others to read?

Maybe these examples will refresh your mind:

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/31936? 2005 =

``(Thank you Marnie for the important magnesium reminders.)''

``I hope this helps until Marnie can come along with more information.'' ``Hi Marnie, I sincerely did not mean to attack you. I'm sorry that I made you feel that way and that I misread your post to mean that you were suggesting manganese supplementation. Like so many here, I have really valued your information. That's why I asked you for the reference. That's also why I immediately went back to edit my post to state that I did not mean to state that magnesium was not important.''

See all my links in my posts in the above link (http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/31936?

Which clearly counters your statement: ``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.''

All my links in 2006 http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/45765? See esp. posted 27 July, 2006 12:17 AM

In 2007...see my links:
http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/37733?

I admit, I haven't always been right and I have been confused by conflicting information on legitimate websites as I tried hard to understand and to learn on my own.

I've been trying to learn, to learn from research and to learn from all of you too.

But quite honestly, I'm tired of snide comments and unfounded personal attacks.

If you didn't understand something, you could have asked or simply scrolled on by.

Posts: 9424 | From Sunshine State | Registered: Mar 2001  |  IP: Logged | Report this post to a Moderator
jmb
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If you do not like Marnie's posts, because you disagree or because you can not understand them then please do not whine. Either do not read them, or better yet read them three times.

We need some brainpower on the front line the Lyme battle, and I would rather the war be waged with good information from smart people, than not-smart people.

I don't agree with everything Marnie posts or understand it all either. But Marnie is ``smart people,'' and I wish there were 10,000 of her working on cracking a complex problem we call Lyme.

--------------------
enjoy the day.

-jmb

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treepatrol
Honored Contributor (10K+ posts)
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Marnie I wouldnt have bothered with a responce sometimes its not worth it. [Smile]

--------------------
Do unto others as you would have them do unto you.
Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.

Newbie Links

Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003  |  IP: Logged | Report this post to a Moderator
Maryland Mom
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I'm someone else who really appreciates the information that Marnie shares here.

When Marnie comes across new information that may help others better understand the complexities of this disease and how to treat it, I for one want her to feel able to share it without recrimination.

If you don't agree with it, or can't understand it, ask questions or just scroll on by, as Marnie said.

Marnie, there ARE some on this board who come here looking for answers and information, and appreciate what you contribute.

As upsetting as some of the comments made may be, I hope you don't allow them to dissuade you from continuing to post your thoughts and your information.

While I understand the need for others to use this board for things other than medical questions--I've whined and vented here myself in the past--medical information IS the main purpose of this forum.

Because of lack of time (full time nursing student and mom of five) I don't respond to most posts I read, but I regularly read many of them in search of new information.

I agree with jmb, we need more "smart people" like you!

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TerryK
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I for one appreciate your posts Marnie. I may not understand everything in them and sometimes not much but I can usually get the gist.

Before you take your break - think about BH4 in relation to ammonia and NOS - it's possible that low BH4 is one of the key problems that is keeping us from getting rid of babesia, borrelia and parasites.

Anyway, thanks for all of your efforts. Hang in there with us. We need you.

Terry

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Faith6
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Thank you for your posts. I don't have the brain power to read from many different sites and figure things out so its nice to read what you have discovered!

Hopefully we all know that every study has another one that disagrees with it....

--------------------
"His faithful love endures forever." Psalm 136

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Pinelady
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I don't either. But I like puzzles. You never know when someone may find the next piece.

--------------------
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

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Melanie Reber
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We DO love you and your passion Miss Marnie! Please know that you are very much appreciated now as ever.

Before you do take a break though, and IF you have the time or inclination... would you mind looking at this post of mine and commenting on the link that goes back to your original feeling re: Phosphorylated serine?

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/84687?#000003

Please don't let the frustrations of some overshawdow the admiration of most.

Love,
M

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Marnie
Frequent Contributor (5K+ posts)
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Off the top of my head, Melanie...I do know phosphatidylserine helps to rebalance the HPA axis - which does look like is thrown off.

And yes, Bb (or US - our response!) is removing phosphates from serines...2 of them and looks to be using them to make ppGpp which is involved in "transcription"...signaling.

It appears Bb is "infecting" our defense cells and ultimately impacting the "health" of our own antibodies.

Bb looks to be impacting the functioning of our own various kinds of WBCs (neutrophils, macrophages, etc.) - which are supposed to help breakdown Bb.

Greatly simplified...got various defensive cells that are giving Bb a HUGE "hug" (phagocytosis)...and when doing so, these defensive cells release chemicals and also begin the breakdown of Bb's multiple Osps layers - exposing proteins to present them to other cells (T) so that we can ultimately make the exact antibody needed to destroy Bb. The antibody must be a perfect match to those proteins (antigens) discovered/uncovered by the defense cells.

Our antibody to Bb's OspB is damaged. Mg restores the "health" of that antibody. Fact. Pubmed. Linked a long time ago and numerous times.

So our own antibodies are damaged...hence the need for antibiotic help...unless we can repair our own antibodies...fast.

Would taking phosphatidylserine help? It might, but ultimately we must go after Bb.

Bb is the leader...he's recruiting generals, lieutenants, and lots of soldiers to help him survive. We can *temporarily* knock out the generals, and many the rest, but he will simply

keep recruiting others.

The same is happening in HIV.

I think of Bb as a "Hitler" who had a huge army of helpers who, in reality, did NOT want to be there - nor should they have been.

We didn't win the war until we got rid of #1.

To the best of my ability and understanding...

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TerryK
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Great explanation Marnie! I've felt for a long time that HIV and Bb have a lot in common!

I also think that zinc is very much needed and involved in the problem with our antibodies being disabled but I'd have to dig up my research on that and I don't think I could explain it very well.

Any thoughts on zinc, Bb and our antibodies?? Supplementation with zinc?? I think you've talked about zinc fingers??

Terry

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Melanie Reber
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Thanks Miss Marnie. Yes, I have been going after the main bug for years now... not too sure what else I can do to combat that bad boy. But, we persist.
Posts: 7052 | From Colorado | Registered: Mar 2003  |  IP: Logged | Report this post to a Moderator
   

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