quote:Originally posted by Keebler: - 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. -
You said it better than I could. Thank you.
James, hahaha!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Yeah, why dumb down everything when you can smarten up for a change
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
Oh no someone left open the emoticon bag and TC found it.
Yeah I'm still around, I broke a fingernail and am waiting for it to mend.
Alright, TC, I like emoticons toooooo!
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
"Spring,
I understood what you were saying from your first post. I see nothing wrong with asking for an easier explanation.
I just wanted you to know that SOMEONE heard you! [Smile]
James "
Thanks James
It was supposed to be a simple comment and request. I did not realize it would cause such an issue.
I honestly do not feel that me or others who expressed this made any drama. I think its the others that keeps acting like its so dramatic and so horrible and rude of me to ask..
Thats my take on the "drama" part of this.
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
I think your post was used as an opportunity for a number of peoples' aggression toward Marnie and the validity of her research to be aired.
That should have been another thread. "Who thinks Marnie is full of bs, and who thinks the same of Bravey?"
In fact, I propose starting a whole new discussion board, "Scrapping Lymies". We can vent our frustrations out there, and TC can find us a whole new host of smileys to really blow things up.
How about them Apples?
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
I've been away for awhile and reread my reply. I really do like your new emoticons TC. Hopefully, it is a sign that there is more giddy up in your steps these days.
I've always thought Marnie provided a great wealth of information and continues to do so. The complexity of this disease is enormous. It takes quite a bit of trying this and that to find specifically what works. And if something does work it may only work for a time and then knowing when to stop and start something new. It makes the disease frustrating for everyone.
The chemistry of how certain supplements translates into reactions in the body is also complex. You can supplement with Mg and find your body doesn't have enough stomach acid to actually use it. Instead it can go deeper into the intestines to feed pathogens instead. So transdermal or iv push might be the answer. Who knows? It could be a herbal, acupuncture, LED, ABX, garlic taken on a full moon only if the full moon is on a Thursday.
Understanding the mechanisms of the chemistry is very important. Reading both Lou and Marnie discussing PPI (proton pump inhibitor like prilosec) in another thread. And how dangerous they can be. Information is important, It get people discussing what they should do if their doctor prescribes it. Instead of just taking the doctor's miracle pill. We all have something to add to solve this problem, if we want to be frustrated, fine, just not at each other.
I hope we can all see the importance of sharing information. Continuing to provide information to each other in each others own way will eventually get everyone well. It certainly isn't going to happen waiting for IDSA to discover what we already know.
I stopped posting for awhile, I guess I just got busy with life or tired of worrying about lyme.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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posted
Time out. First, thanks to Marnie and those others who take the time and have the compassion to research and post. I've seen similar threads come and go and bless Marnie and others for sticking around.
I will be the first to admit that I don't understand a lot of what Marnie posts. I have done as suggested in trying to research on my own with disappointing results.
I've ended up in tears trying to decipher things. My brain isn't there yet. I was never the sharpest crayon in the box but I wasn't on the short bus either. Even pre-Lyme I think I would have had problems understanding.
I haven't posted about this in a long time because I don't like to make those who are doing the in the trenches technical researching feel us though they are being attacked, but it really is valid to say that a lot of us just don't understand and leave such posts frustrated because we feel we've really missed out on something of great importance.
I have printed out things that Marnie and others have posted and asked a Dr. friend to help me understand (BTW he returned it to me with a big red F written on it - said he felt like he should send his diploma back because obviously he missed a semester or three :-)
All that being said, we need the diversity and the knowledge. The more we know and share shortens the time before someone puts two and two together and makes that EUREKA connection and we are all cured of this terrible illness.
How about a compromise?
Is someone here with the knowledge base and good translation skills willing to break technial and complex posts like this down to the bare bones and summarize it for those of us who are unable to understand? Please?
Posts: 237 | From WV | Registered: Mar 2007
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Hi Bob.
-------------------- 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
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Obviously your doctor friend, motownlyme, is MUCH smarter than the DOCTORS AT A CANCER HOSPITAL IN ROMANIA who figured out the following:
"Lyme disease and magnesium deficiency
V. CRISTEA - Department of Immunopathology, Medical Clinic III, "Iuliu Hatieganu" University of Medicine and Pharmacy, MONICA CRIAN - Department of Immunology, "Ion Chiricu" Oncological Institute, Cluj-Napoca, Romania
During the period April 2001 - January 2003, we had under observation two cases, in which the presence of both IgM and IgG antibodies to Borrelia burgdorferi was serologically confirmed at high titers.
In both cases, clinical manifestations were similar: shivering, fever, headache, articular and right hypochondrium pain, and objectively - tachycardia and erythema migrans - these elements being important for the formulation of Lyme disease suspicion.
Humoral tests showed: significantly increased ESR, leukocytosis with PMN predominance, intensely positive PCR (for B. Burgdorferi DNA)
and significant magnesium deficiency (1.20 mEq/L, 1.33 mEq/L, respectively).
A large spectrum of antibiotics with both oral and parenteral administration has been so far used in the treatment of Lyme borreliosis. Among the most frequently used are tetracyclines, betalactamides and cephalosporins.
The decision to initiate antibiotic therapy can be difficu1t because in the majority of the cases acute infection is self-limited. Asymptomatic patients, in whom laboratory examinations sustain the diagnosis of Lyme disease, should be treated in order to prevent rnfection dissemination.
Since in the first case antibiotic therapy alone did not lead to the expected results, magnesium derivatives were also associated.
In both cases, following combined therapy, symptomatology significantly improved at 14 days, and laboratory examinations were restored to normal values after 6-8 weeks - disappearance of IgM to B. Burgdorferi and significantly increased magnesemia (1.74 mEq/L, 1.72 mEq/L, respectively)
We believe that in certain diseases, Mg deficiency can cause a decrease in immune response.
he appearance of recurrences, which are frequently reported in the literature, in spite of adequate antibiotic therapy, could represent an argument for this.
This is why the use of Mg derivatrves in therapy can represent an immunostimulating factor. The peculiarities of the cases are the following:
1. Patients had in addition to fever, articular pain and erythema migrans, Mg deficiency
2. The supplementation of therapy with Mg derrvatives had an immediate beneficial effect that was maintained in time.
As a conclusion at this stage, we consider that in the acute phase of Lyme borreliosis there is a significant Mg consumption and the introduction in therapy of such preparations is recommended and beneficial."
The faster we can tame down inflammation (and provide anti-histamine support) while also hitting Bb with abx. the better.
Bb NEEDS inflammation to happen.
Ongoing inflammation is NOT healthy.
I highly recommend a book written by a ER doctor titled:
Hippocrates Shadow.
And the true story - made into a movie titled:
First Do No Harm
It is available on Amazon.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
All minerals and vitamins are important in rebalancing the body to work correctly. Mg is very important and is essential to rebalancing cellular activity. However, there are many who have gone the approach of Mg and ABX only still to have chronic inflammation and symptoms.
The problem: no reliable test for the existence of Bb, no reliable test for the efficacy of treatment. Is what I am doing going to get me well. LLMDs and LLNDs do a good job at guessing (yes guessing) but far from conclusive.
Do I really need to get rid of Bb to be well? If I got rid of the inflammation wouldn't I be well? Can Bb inside my body be no more pathogenic then an inactive candida?
This has been the problem with lyme treatment. That is the challenge, how to reliably treat this disease.
If magnesium is important but still not able to get rid of inflammation, could it be the cells can't uptake enough Mg to reduce inflammation? It could actually be creating inflammation if there is too much Mg. The body can't use it and it is free floating.
Why is the uptake soooo poor, the cells are too sick to work normally for the uptake of Mg. ABX can't get to the cells because Bb is in cyst form.
Let's get back to diagnosing a problem: I feel pain therefor I have inflammation. Inflammation can be because Bb has infected the liver and the enzymes to do certain biological functions are compromised preventing signals to the cells to some place in the body to work correctly. This by itself can lead to inflammation. An example: I have a toothache which affects my speen and the spleen isn't cleaning the blood well enough causing the blood to slow down a smidge. The lower throughput causes edema in the legs.
You could have all the Mg in the world in your body. But if it isn't local to where the inflammation is, it may be useless in solving a symptom. So delivery might be the key to resolving inflammation.
After reading Mg might be helpful we go to walmart and buy the first bottle of Mg to replace what we think we are missing. To discover, it didn't do anything. I still have the pain. So our conclusion: Mg wasn't it. This is the dilemma we live with. In fact Mg might have been essential to wellness, but there is no uptake where it is needed. This goes for other important minerals and vitamins -- such as zinc, b-vitamins, ... on and on.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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massman
Unregistered
posted
Good points lymie_in_md.
The source of Mg is very important. Some supps are much more easily absorbed than others.
Many people assume that all Mg supplements are the same + the only difference is the price.
And the health of our digestive tract is also critical. You should have strong stomach acid to digest protein well.
All the advertising about the "bad" stomach acid leads to self treatment (and doc treatment) that can greatly interfere with nutrition uptake.
And good points about "cofactors" that can interfere with proper absorption. Fats are like taxis for minerals + our current fat phobias lead to decreased mineral transmission.
With lyme it seems that some things are dumbed down too much + others are made too complicated.
posted
I apologize for voicing my opinion and trying to bring some humor and a potential solution into this long standing situation. I can see that it was not taken well. I will not make the mistake of doing so again.
My attempt was only to support those who research and to find a way for those of us who try and still don't understand to benefit from it. You can be sure that I will NEVER again voice my opinion on the matter after this post.
I've been trying my very hardest to get two Doctors interestd in Lyme. One is Internal Medicine and the other is strictly research.
One came to this site because he didn't really believe that the research could be so in depth that I would need a Dr to translate for me. He was impressed by the amount of information and research and even made the comment if he had a few researchers like he saw posting here, his own project might be moving more quickly.
And then he was driven off by threads that are pretty much similiar to the one - just insert a different research article.
His point was it's good and productive to have argument back and forth but felt, as I do, that those who do not understand are degraded by those who do - even if it is in subtle way.
So I still try to get him interested and try to see if he will write a proposal for a grant to get some research money for a lyme study. He comes back every now and then and lurks to look at the research.
The other Doctor looked at the site and said, "My God, no wonder Doctors don't want to deal with Lyme patients." Yes, he's a wuss, but I took a shot. A treating wuss who will follow the guidelines is better than nothing at all.
We are on are own since so many in the fields that could really help turn away. We aren't helping ourselves by bickering and refusing to help on another.
Done. Off soap box.
Posts: 237 | From WV | Registered: Mar 2007
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
this is all good and well, and the discussion can go back and forth for years to come, but the question still remains.....
To supplement w/ oral mg or not? IM mg? any mg?
I asked this question years ago and still we are left with little answers.
At the time I was concerned Mg fed bart which now seems calcium does but these are both vital nutrients we need!!!
Personally recently when I try to supplement with oral mg complex (500mg) I get the chills, seem freezing cold, and become emotional.
Herx? Any ideas? Am I just feeding the infection?
DK seems to think oral administration of mg just feeds the bacteria, but who knows what to think at this point.
like bob said, were all different and need to do what works for us each individually, but i think therein lies the problem.
finding what works for each one us is quite an undertaking...
So to Mg or not to Mg, and in what form is my question to any/all interested.
Thanks
Derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
"the cells can't uptake enough Mg to reduce inflammation"
Yep.
Once Mg levels drop, it leads to a
downward sprial.
Mg is attached to our ATP as Mg-ATP and it helps to transfer phosphates.
We KNOW Bb is inhibiting phosphate transfers.
Bb has a "PKC ***inhibitor*** ".
That is a C= calcium activated, P= protein, K= kinase (transfer phosphates).
Repeating...Bb is preventing phosphate transfers.
ATP, as I understand, triggers Mg influx.
In the infected cells, too little ATP is being made (glycolysis = 2 ATP while oxidative phosphorylation = 36 ATP).
The infected cells are only functioning using glucose to make too little ATP.
Biofilm is not only a way for Bb to communicate with other Bbs, but also a
safeguard against oxygen.
Bb does not like much oxygen. Bb is not a strict anaerobe (doesn't need ANY oxygen).
Bb is using OUR glucose for its biofilm and triggering the cells it is camped out in to rely solely on glucose.
Our defense cells' mitochondria (powerhouses) maybe being deprived of sufficient glucose AND oxygen -> mitochondrial dysfunction.
Oxidative phosphorylation...making 36 ATP is NOT HAPPENING in the defense cells.
It appears Bb may use Mg (export?) and Ca and Fe (transferrin protein - Bb has this iron transport protein) and glucose to build his biofilm - like many other pathogens do.
Think of it this way...Bb makes the cells "cold". So we need to HEAT them up, to "de-ice" them.
We send in the "de-icers" NaCl and CaCl.
(Don't you northerners use salt to melt ice on your driveways?)
Bb needs NaCl for motility! Wrong "de-icer"!
MgCl is also a "de-icer".
When wounded, what do we do?
We ICE the area first. Reduce inflammation. And later, we apply HEAT to help the area to heal.
We know, mice infected with Bb and exposed to UV light -> greater infection!
Why?
When cells have a receptor on them called CB2 and they are exposed to UV light this -> inflammation! That is how UV light can trigger skin cancer.
If Bb's PKC inhibitor IS PKCB2, wouldn't it be logical for the infected cells to send to the surface a "call for help"...the CB2 receptor?
CB2 receptor + UV light -> inflammation!
This maybe why...giving drugs in the Tetracylcline class (and telling us to stay out of the sunlight) is so important ...immediately.
Don't trigger inflammation.
Reduce inflammation AND hit the pathogen.
Once Bb has a foothold, this becomes much harder.
Someone tried ONLY following and she felt better:
Mg citrate, 100mg, PLUS a B complex, PLUS a lecithin
5 doses per day...divided.
And she felt a LOT better within 3 days, but...
the "herx" came on "schedule" and she got scared and went back to abx.
We expect a herx from abx, but get freaked when natural things cause a "herx".
An Italian doctor named Valletta has a U.S. patent titled "Magnesium for autoimmune". In 3 months time he cured bowel cancer, RA, etc.
He jumpstarted the process via IV MgPyrophosphate.
What he used was MgPyrophosphate (MgPPi) and sub B6 (sublingual B6...under the tongue...P5P - the active form of B6). B6 works WITH Mg.
Now...
When rabbit psoas muscle fibers bathed in solutions containing the
ATP analogue magnesium pyrophosphate (MgPPi)
are first" ...
Hold the phone...
MgPPi is an ATP analogue (=similar)!
Problem is...where do we get MgPPi = Magnesium pyrophosphate? Who will administer it?
Who will believe that it just might cure autoimmune diseases and cancers?
If Bb is triggering the cells to be cold...
Doesn't infrared therapy heat the cells? Don't sound waves also heat (that is how our microwave ovens work)? Didn't ICHT therapy in Italy cause the cells to be "heated"?
What happens when proteins (like those in Bb's cell walls) are heated? Think about cooking an egg.
While damaging Bb's cell walls is good (or preventing them from forming in the first place), we still have to address CWD (cell wall deficient) Bb.
And to do that, to "finish the job" looks to be via 2 ways: osmotic PRESSURE changes or ultrasound.
Which maybe how/why HBO or Rife therapy helps.
When cells are deprived of oxygen (ischemia) this is what happens:
The effect of ischemia on muscle appear to be related to the ischemic time.
The initial effect on energy metabolism as measured by tissue ATP, blood and muscle pH is
***the cessation of oxidative phosphorylation.***
The conversion of ADP to ATP is markedly reduced and lactate is produced.
When these conditions persist, the integrity of the sodium pump in cell membranes becomes compromised
resulting in
***loss of intracellular potassium and gain of sodium and chloride ions into the cell.***
This results in an ***increase of intracellular osmotic pressure*** with a shift of water into the cell which causes an oedema of the cell."
Title only: Reduction of Edema with Hyperbaric Gas-Induced Osmosis
Another title:
"Hyperbaric Oxygen in the Treatment of Elevated Intracranial Pressure after Head Injury"
(but there maybe a rebound effect)
When some heart surgeries are performed, they actually cool down the body. But re-warming is done very slowly and very carefully because it can trigger sudden re-bound inflammation (cool reduces inflammation).
So it is important to have anti-inflammatory "help" available.
Okay...more than you wanted to know, right?
Finally...when you are ill and first get the chills...EXACTLY 20 minutes later is when your fever will spike.
Cold then heat.
Bb is making the cells cold so we send in the "de-icer" NaCl which Bb uses for motility.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
Marnie -- I would add the following to the recipe. Kombucha tea to kick start acid production in the stomach and to normalize the enzymatic processing in the liver. Plus LED along with rife to the heating. You notice folks who whittle away time at the beach feel so much better healthwise. The therapy of just going to the beach and sitting in the ocean on a sunny day. It combines so many therapies at one time. The warm of the sun and a natural LED device, the frequency generation of moving ocean waters similar to rife. The grounding of bare feet in the sand. The air is full of negative charged ions. The air is full of salt and minerals. A full body message. A way to exercise without putting pressure on the joints.
I suspect Mg uptake and reduction of inflammation is associated with many of these ocean oriented principles. We are doing nothing more then trying to replicate what nature has already provided. The perfect healing environment might just be sitting in the ocean a couple of hours a day while trying to kill lyme and crew with whatever method chosen.
I've been a great believer of kombucha. I know many will say, what about yeast. Actually drinking large amount of kombucha (16ozs) a day might help control candida issues. I also think it reduce inflammation and increase metabolic function. I also think it correct stomach acid imbalances.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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posted
**Bb is making the cells cold so we send in the "de-icer" NaCl which Bb uses for motility.**
So, Marnie, what are your thoughts on the salt cure and/or Vit C/salt treatment?
Bob, I like your beach treatment theory, definitely plausible. We are major beach lovers--too bad meds have kept us out of the sun all year!
Yum, Kombucha is great!
Posts: 648 | From northeast | Registered: Feb 2009
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
I wouldn't touch "excess" NaCl.
If B6/P5P levels drop, to control Na, the body will upregulate aldosterone -> testosterone/estrogen dependent
And you know, I'm sure, what that can lead to.
(Increased risk of prostate/breast cancers.)
The combo (NaCl + loads of vitamin C) may increase hydrogen which does go right into the cell (but Bb looks to exchange H for Na).
I'd use the saturated (= hydrogen loaded) medium chain fatty acids.
VCO (virgin coconut oil).
Caprylic acid in the liver converts to a ketone that inhibits the ACC2 enzyme which shuts off fatty acid synthesis.
Bb wouldn't be happy. Bb needs fatty acids.
And the lauric acid in VCO may take care of viruses (if Rife was right)...
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Hi Marnie,
With respect to Magnesium, if Bb is using it how is it beneficial for us to supplement?
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Magnesium is essential to so many functions of our body/brain.
Some of the symptoms of lyme (and with a herx) are due, in part, to magnesium depletion. Our cells really need this in order to survive. We still have to feed our body, even if Bb uses some of that food. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Marnie,
Sodium is a natural bacteriacide and the salt/c protocol is putting my Lyme into remission. I don't understand how bb could use salt to it's advantage if salt kills bacteria, and bb is a bacteria.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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I agree that VCO is very beneficial for so many reasons, as is magnesium.
My child is on both.
Posts: 648 | From northeast | Registered: Feb 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- canbravelyme:
Carol in PA just posted this at another thread:
Some of the symptoms . . . may be due to magnesium deficiency.
Chronic infections can deplete the level of magnesium within the cells, even when the blood test is good.
If supplemental magnesium eases some . . . symptoms, working on the rest might be easier.
. . .
The Importance of Magnesium to Human Nutrition
What are some of the symptoms of magnesium deficiency? With regard to skeletal muscle, one may experience twitches, cramps, muscle tension, muscle soreness, including back aches, neck pain, tension headaches and jaw joint (or TMJ) dysfunction.
Also, one may experience chest tightness or a peculiar sensation that he can't take a deep breath. Sometimes a person may sigh a lot.
Photophobia, especially difficulty adjusting to oncoming bright headlights,
and loud noise sensitivity from stapedius muscle tension in the ear.
Central nervous system symptoms include insomnia, anxiety, hyperactivity and restlessness with constant movement, panic attacks, agoraphobia, and premenstrual irritability.
Peripheral nervous system include numbness, tingling, and other abnormal sensations, such as zips, zaps and vibratory sensations.
Cardiovascular system include palpitations, heart arrhythmias, angina due to spasms of the coronary arteries, high blood pressure and mitral valve prolapse.
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