Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
While antibiotics do make you:
1. Feel better 2. Keep co-infections under control
They have very meaningful downsides:
1. Do not CURE lyme 2. Destroy the beneficial bacteria 3. Contribute to bacteria mutations
The following may be of interest:
Antibiotics
Immunomodulatory & Anti-Inflammatory Properties
At the 2002 European Congress of Clinical Microbiology and Infectious Diseases, a paper was presented showing antibiotics have anti-inflammatory properties in addition to their traditional antimicrobial effects.
Why is this important to us as patients? Many of us are helped by antibiotics, despite negative cultures. Why is that? From research in the last decade or so, it appears that many antibiotics can, in some people and for a limited time, act as anti-inflammatories or immunomodulatory agents.
The acceptance of the anti-inflammatory and immunomodulatory aspects of antibiotics came mostly from the inflammatory bowel disease experts, who long pondered why antibiotics helped many patients with Crohn's disease despite no obvious infection. In 1999 they came to some startling conclusions.
People ask why antibiotics help them even though traditional NSAID drugs don't. The answer is that some antibiotics have different anti-inflammatory effects to NSAIDS.
Tetracyclines are useful in rheumatoid arthritis by inhibiting the expression of nitric oxide.
Minocycline too is a powerful immunomodulant which can subdue rheumatoid arthritis.
Tetracycline and doxycycline may also act as anti-inflammatories by modulation of nitric oxide synthesis.
Studies also suggest that the clinical effectiveness of doxycycline in the treatment of acne inflammation is due partly to its antioxidant effect on neutrophils.
Gentamycin, an aminoglycoside antibiotic, may exhibit an anti-inflammatory action due to inhibition of neutrophil NADPH oxidase activation.20
The quinolones (Cipro and many more) show anti-inflammatory activity by reducing the potent reactive oxygen species excessively generated by neutrophils at the sites of inflammation.
This leads to a reduction in oxidative tissue injury. Another recent study of cipro states that "ciprofloxacin decreases the accumulation of interleukin (IL)-6".
The a study on study on Inflammatory Bowel Disease concluded that "ciprofloxacin [has] both anti-inflammatory and immuno-suppressant effects that may be more important than [its] antimicrobial effects".
It is therefore generally agreed that quinolones such as ciprofloxacin inhibit production of TNF-alpha, IL-6, IL-1, and PGE(2). One quinolone, perfloxacin, has even been able to induce remission in nephrotic syndrome.
Quinolones are usually made up of a ring structure of 4 quinolinones. A quinolinone derivative called TA-270 has proved to be more effective than anti-asthmatic drugs in controlling asthma in guinea pigs by scavenging reactive oxygen species.20
Erythromycin may inhibit cytokine production too. A 2000 study confirms that macrolide antibiotics (roxithromycin, clarithromycin, erythromycin, and azithromycin [Zithromax]) prevent the production of proinflammatory mediators and cytokines.
Clarithromycin is thought to be effective in chronic sinusitis by reducing gene expression of proinflammatory cytokines and adhesion molecules from nasal mucosa at the transcriptional factor level, thereby exerting an anti-inflammatory effect on nasal mucosa.
Amoxycillin (Imacillin) has been shown to decrease bowel inflammation in ulcerative colitis.
Bactrim (trimethoprim-sulfamethoxazole) has recently been shown useful in the treatment of autoimmune diseases, such as rheumatoid arthritis.
Bactrim therapy also reduced the elevated levels of soluble IL-2 receptor and IL-6 in parallel in another inflammatory disease, Wegener's granulomatosis.
The beneficial effects of metronidazole (Flagyl) in acne vulgaris are attributable to its anti-inflammatory activities rather than its antibacterial ones.
Cephalexin, penicillin G, chloramphenicol, and streptomycin inhibit reactive oxygen species generation via their effect on polymorphonuclear leukocytes cell function directly, with resultant anti-inflammatory effects on the inflammatory processes.
Still doubtful? See "Key Paper on Antibiotics as Immunomodulators" (in Miscellaneous section) at Independent Scientific Papers website.
This 36-page paper puts to rest any doubt that antibiotics are indeed both anti-inflammatories and immunomodulators. A small sample:
"The use of antibacterial agents as anti-inflammatory drugs falls into four categories: (i) agents which have been in use for a long time (sulfones, sulfonamides, and clofazimine);
(ii) drugs which have recently triggered interest, particularly in rheumatoid arthritis (cyclines and ansamycins);
(iii) drugs which are effective in specific diseases (for example, macrolides in diffuse panbronchiolitis) and show promise in other inflammatory settings; and
(iv) drugs which could be developed in the near future but are at present only being studied in animal models. Classical use of antibacterial agents in inflammatory diseases.
In addition to its antimycobacterial activity, dapsone exhibits significant anti-inflammatory activity and has been utilized in many neutrophilic dermatoses and other inflammatory diseases such as dermatitis herpetiformis, leukocytoclastic vasculitis, bullous lupus erythematosus, pustular psoriasis, erythema elevatum diutinum, and Crohn's disease (36, 96, 169, 303).
Similar indications have been put forward for another antimycobacterial drug, clofazimine, which has proven effective in vitiligo, discoid lupus erythematosus, pyoderma gangrenosum, and pustular psoriasis (53, 233).
The effectiveness of these two drugs in mycobacterial diseases has been also ascribed at least partly to their anti-inflammatory activity.
As indicated above, both dapsone and clofazimine significantly depress the inflammatory potential of phagocytes; this property clearly seems to underlie their anti-inflammatory efficacy. Similarly, sulfonamides have proved effective in the treatment of Wegener's granulomatosis (325), and sulfasalazine (and sulfapyridine?) displays antirheumatic activity (308)."
[CLINICAL MICROBIOLOGY REVIEWS, 10 Oct. 2000, p. 615-650 Vol. 13, No. 4 Interference of Antibacterial Agents with Phagocyte Functions: Immunomodulation or "Immuno-Fairy Tales"? Marie-Therese Labro].
The powerful expensive TNF alpha blocking drugs come with the "side effect" of increasing cancer risk.
Gi Gi is right. Hg does indeed trigger autoimmune as Hg binds to C-acetyltransferase - The enzyme needed to make acetylcholine (A metal attaches to something acidic). HOW to stop this from happening WITHOUT causing further problems (elevated testosterone in men leading to increased HDT)is the tricky part.
Our bile, if not thick, is supposed to remove heavy metals.
Logic would indicate we need to keep bile flowing so Hg does NOT bind to this enzyme.
If Hg is already bound, how to remove it becomes trickier.
It looks like selenium can displace mercury (pubmed). Selenium works in concert with vitamin E (which we know drops in lyme). This is best taken with meals according to Mercola. It looks like the antioxidants...these in particular are really, really important.
[ 11. November 2006, 10:46 AM: Message edited by: Marnie ]
Posts: 9481 | From Sunshine State | Registered: Mar 2001
| IP: Logged |
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Think "outside the box".
There are indeed reasons WHY far infrared can help (a lot!), WHY ozone saunas (reported here...and then "chased off" ) work. Reasons WHY Rife works, reasons WHY highly specific nutrients work.
You CAN get well. Others have gotten well - even who had this infection for a long time.
But it will take time.
NEVER EVER say lyme cannot be cured!
Posts: 9481 | From Sunshine State | Registered: Mar 2001
| IP: Logged |
posted
I am starting to consider myself cured, although I am afraid to jinx myself.
I do believe it can be done, however, you must be willing to think outside the box. Just my opinion based on my experience.
All My Best, Scott
-------------------- BTW - I am NOT a medical professional - just speaking from MY own personal experience. Posts: 266 | From Philadelphia | Registered: May 2005
| IP: Logged |
Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
Marnie, I have noticed that you subscribe to many 'creative ideas' of IDSA. I am afraid that many of us on this site have a very opposite view of things.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
| IP: Logged |
robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
Ummmmm ..... I don't tink Marnie is the IDSA in disguise.
Marnie's (and other folks talking of alternative) views are definately moving me in the right direction.
ABX are part of the solution .......... IMHO definately NOT the whole answer.
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
| IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
I have "thought outside the box" and tried many many different alternative options over the course of 20 years. For me there has been no such thing as a "cure" for my chronic lyme & TBI's.
For me the thing that got me in remission consistantly over the years are abx and herbs & supps. ABX at the top.
After getting my germ load down & addressing the co-infections with traditional ABX & meds - rife is keeping me in remission for the last 6 months ...for now...knock on wood.
I do understand the risks, but for me the risks of un-checked TBI's are more dangerous than the ABX route has been for me.
I welcome anyone's choices on their journey to wellness where ever it may take them.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
Marnie, WOW! What a mind bender. Thank you....very interesting!
It makes sense, since the herbal ABX are also anti-inflammatory and immune modulating as well as anti-microbial, with Samento being the perfect example. How do we know which of those functions is producing the resluts we feel? I realize that I don't know for sure! You have just caused me to have a "light-bulb moment".
If true, then the idea put forth by many Rheumy's that FMS sx are primarily due to over production of Th2 cytokines may actually be true....it may not always be killing a Lyme infection, like I have been thinking.
It could even be Hg alone setting off the chain reaction, or other toxins, depending upon the person and their genetic ability to excrete toxins.
The folks at The Road Back Foundation may be seriously misguided as well regarding HOW their ABX are positively affecting their RA. This may also explain why we never get completely well, and have to keep coming back and taking more of whatever it is we take, whether herbal or prescription.
We need to keep open minds, no matter which side we are currently on. I sure don't want to be hypocritical like those narrow-minded Yale ducks and stick my head in the sand. Myself (and others) may have been ignoring a basic scientific truth, ie. that correlation does not prove causation.
As a person who majored in the Social Sciences, may I thank you once again for generously spending your time here and infusing some scientific know-how for those, like me, who are not so well-versed.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
| IP: Logged |
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Most of our worse bacterial infections are gram negative (the exception is anthrax). They have multiple cell walls.
To lyse (break apart) a gram negative pathogen involves several steps.
1. Damage or destroy the cell wall or *prevent it's formation in the first place*.
Bb's cell wall is UNIQUE! This is a unique pathogen. That is why traditional abx. aren't working.
However:
We KNOW that Bb needs choline. IF it's outer wall contains that mentioned below, it may hint that halting VLDL (very low density lipoproteins) release from the liver (via INactivating HMG CoA reductase) could be extremely important.
"Preliminary experiments suggested a stoichiometric interaction between P-choline-binding protein and VLDL. Hydrophilic P-choline groups exposed on the surface of VLDL may possibly interact with the P-choline- binding protein and thereby affect the precipitation of lipoproteins by heparin and Ca2+."
Stoichiometric means: Calculation of the quantities of chemical elements or compounds involved in a chemical reaction.
Or: a stoichiometric reaction, i. e., a reaction which goes to completion, rather than stopping partway at an equilibrium point.
It sure looks like INactivating HMG CoA reductase AND INactivating PFK simultaneously would indeed do in this pathogen.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
| IP: Logged |
klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
Marnie, A lot of that was Greek to me! But, since I know from my Cardiologist, that high levels of VLDL are strongly correlated with high levels of triglycerides, would getting your triglycerides down help with this problem you are discussing?
In that case, a no simple carbs diet plus a drug-level niacin supp. might be a good idea for us. It worked for me.
(Of course, I am assuming Mg supplementaion to help inactivate PFK as well)
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I strenuously object.
I just don't object.. I strenuously object.
The Bumsteere group has been trying to push this theory for a while now and I don't buy it.. not one bit. Also note.. they tout it.. but have absolutely NO proof!
They do what they accuse US of doing... saying something works with no PROOF!
In MY opinion.. it's just another way to reduce the antibiotic's we take to accomadate their bigger plan.. and to:
1. Discount the importance of antibiotics in their new world, which consists of multi-millions of dollars in income. They are already claiming they need to do more "research" on other POTENTIAL emerging diseases and bio-terrorism stuff.. which includes LOTS of big bucks in their pockets... where as Lyme, HIV, and a host of "auto-immune" diseases have dried up with funding... or will be soon.
They are building their new sandbox to play in, with new research dollars... from a variety of sources.. and NOT focusing on those who are sick or on addressing the CAUSE of the problems.
They admit to it.. just look at the IDSA guidelines where they repeat the fact that there is NO credible evidence to support other views.. and they discount ALL of the thousands of research papers... but theirs!
2. They KNOW they flunked out on all that has been going on in the past, that they have been involved with. To them it was just a job with an income... and a good income at that.. YOUR tax dollars. They've now declared the Lyme we have is not Lyme.. but a post Lyme syndrome. That is important to remember here.
So what will help folks with this POST-Lyme Syndrome.. and all these diseases that will have no cure if they restrict antibiotics, according to them?
YES! More drugs to address the symptoms! And who funds their research? Drug companies, ya think? Along with you and me and everyone else.
Right now the antibiotics on the market are an "older product". No longer can the drug companies make as much money on them.. as many have already, or will go, to generic soon.
Soooooooooooooo.. the big money they desire... and to keep their in-flow coming.. is in the NEW drugs that need to be "discovered".
The Bumbunch are getting heat now from LOTS of sources.. those against vaccines.. those in the military with strange illnesses, those with chronic illnesses and auto-immune diseases, etc. etc. People are catching on that their way DOESN'T work! They must get while the getting is good.
Do you remember how the Bumsteere gang scattered and changed jobs when the Lyme vaccine was discredited? Run, run, it's save your buns day!
Do you remember years ago how the duck in Maryland quit their own practice... and the docs scattered far away... and by doing so they managed to avoid paying the $3.2 million that was awarded to the mother of the child who was disabled from Lyme? (By the way.. the duck moved up the road .. started a new practice .. and is STILL following the IDSA guidelines!)
In order to curtail losses in their little world, the Bums MUST have a back-up plan.. something that will convince the legislators they need more funding. We are the ones paying for their money games... in more way than one.
3. IF.. and there is NO proof at all.. the antibiotics cause any kind of anti-inflamatory reaction along with the killing power they have.. so be it. That's like getting 2 cherries on top of the hot fudge sundae.. instead of one. Big deal!
Now.. let's say they want to further this area of research.. on just what the magic part of the antibiotic is that helps folks.. cause it sure can't be the KILLING power that works on all these disease that STILL have no known cause and no known CURE. Heaven forbid!
After 20 more years of collecting research money from the govt.. your tax dollars.. and money from private companies with other motives... they can declare "X" is the thing that makes folks better in the expensive drug trials they will do.
Then the "X" ingredient is put into pill form.. and WOW.. everyone is happy! The money chain continues! The only bad thing is.. the patients are now depending on surgeries, chemicals, drug after drug, etc. to stay alive... when they could have cured their illness had it NOT been for the strict limitation of the thing that actually would have worked.. the antibiotic!
4. Do I think antibiotics are the only answer.. or that they cure all of us? Absolutely NOT! But.. I do know they can work if done right under the right circumstances... and they have worked for many.
I hope NO ONE will encourage these IDIOTS to push that garbage down our throats.
You must ask yourself... given a choice.. would you take the "X" ingredient in that special pill to reduce your symptoms... that will take 20 years to be approved...
Or would you opt for something to address the cause of the symptoms now.. and be done with it?
Sorry.. I just can't believe.. after knowing these toads for all this time.. that there is some secret magic formula in our antibiotic that is making us feel better. What a load of GARBAGE!
We have INFECTIONS. We need meds to address those infections! We also need other things too... like better antibiotics with less side effects... and more "natural" ways to address the side effects and our immune systems.. etc.
Ok.. time for supper.
And... If you didn't read this far.. I don't blame you.. and I don't care. At least I feel better having said all that outloud.
klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
Sorry if my question was so stupid as to offend you all! I was not around when all these things took place in the past, so did not have the background you have to automatically make you able to know that this must all be B.S.
I have heard of Steere, but did not realize he had anything to do with this information. I was still firmly in the "you have Fibromyalgia" camp back then and had never heard of Lyme.
I guess I just desperately wanted it to be true. I am losing the battle, and fully expect to die within the next five years the way things are going, so I was hoping there was a chance that part of what I believed could be wrong....guess I should know better by now.
Please don't twist your panties into a knot on my account!
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
| IP: Logged |
posted
just to second a few opinions on here--ABX are definitely helping some way. How else can a brain clear as evidenced by a before and after Spect scan and treatment with abx?
Granted, i do agree that at some point and in some people, something more than abx are needed. I credit ABX for getting me to the point that many alternatives--herbs, homeopathic remedies to name a few, have helped get me over the next hurdle.
However, i also must add that the comment by Marnie on VLDL and it's part/role/symptom in this disease is indeed interesting. I can't follow the chemical cascade as she indicated but I do know that once we started treating a growing cholesterol problem with chinese herbs I feel like I'm getting another boost over the next hurdle and the cholesterol problem is declining.
there are many,many pieces to this puzzle. the only way to really get the final answer is to keep an open mind, research, and try and squash those who are ignorant(ducks and insurance cos) from allowing you to continue your hunt for a cure.
Posts: 132 | From SE Pa | Registered: May 2006
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Klutz.. o...
Just so you know.. I wasn't addressing anything you said. Hope it didn't sound like it.
I just don't want folks to think the Bumsteere camp.. who has been planting that scenerio in the minds of those who will listen .. and even doing some reporting on it... has the upper hand on us. I don't know much that I should about life and things that go bump in the night.. but I do know now to watch my back if I expect to survive this hand I was dealt.
NEVER could I have imagined anyone could be that evil and have so little regard for human life.
I don't want anyone here "sucked into their hype" until they look at it closely for themselves. I do believe that this is what they want "us" to believe. They would have to make this theory "general knowledge" and raise questions to further their millions in requests for research dollars... so do be aware of that point.
And Lyme ED is right.. "It is entirely valid to treat someone in order to improve their symptoms and to prevent further clinical deterioration ... esp. with a disease like Lyme which can cause severe morbidity, and in at least some cases mortality."
If the Bumsteere camp were in charge of cancer.. would they insist no treamtent for anyone because there might be side effects?
Or would they say to a cancer patient... "everyone is cured with 28 days of treament and after that NOTHING.. and no one can take vitamins or supplements.. and you had to be in the late stages before you could get the more expensive treatment"?
Would they say to a cancer patient you must have a positive test to be treated.. KNOWING the tests miss up to 90 percent of the people with cancer?
Soooooooooo.. just know I wasn't addressing you. It just busts my bubble to think they are headed in this direction.. just as others are discovering that antibiotics are WORKING for so many diseases that hadn't tried them yet.
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
I am one who has been treating this round of lyme holistically. That was not by my choosing, although I didn't argue it either. Had the LLMDs (2) put me on abx, I would have been on abx. I never would have accepted longterm abx though. I bought into the fact they are dangerous long ago. I am interested in getting well. I am not interested in killing myself. I'm trying to stop Lyme from doing that for me.
I am managing my disease very well through diet, supplements and detoxing IVs of glutathione and lipostabil. I learned just this week that I am not well enough yet to forego any of the treatment the doctor has me on. Instant relapse. Sound familiar? All I had to do to stop my herx was go back to the vegan diet for a couple of days. My body began detoxing immediately which I find amazing. Many of you are managing your illness on abx. It really is a matter of choice and a choice I believe you should be allowed to make.
But how many of you would really choose the risks of abx side effects if you believed that diet and cleansing the body through detox,were just as effective and without the harmful side effects? This is what 2 LLMDs and 1 MD not LL told me and I believed them.
Looks like they are right. Furthermore, they firmly believe that as they lower the load of heavy metals, yeast, parasites while boosting my elimination systems, my immune system is going to get stronger and win the day over Lyme. Man, I sure hope they are right about that too.
At the very least, I am controlling this disease while strengthening my body. I just simply like the idea of that.
This morning I read the rebuttal by the ILADS president and I was stunned to read his statement that chronic Lyme patients choose to have "quality of life albeit a shortened one". That is paraphrased, but I promise I did not alter his meaning.
This statement just stunned me. It clearly agreed that the longterm abx can be deadly but an early death was preferred by chronically ill lyme patients if symptoms could be alleviated until death.
I'm sure a few of you feel this way, but do all of you realize this is the risk you are choosing? WHY???? If death is the price you are offering up, then why not at least give holistic care a try first?
I think about those of you who defend the right to bombard your children with longterm abx and I just have no words for the shock and disbelief I feel. I can only think you don't realize this is the probable outcome. While I knew the risk was there, I did not understand that the doctors give you these longterm abx not in hopes of curing you, but to ease your misery unto the point of death.
Well, I'm sure this won't be well received and I am sorry. It isn't my wish to argue with you, but don't assume that everyone who proposes an alternative approach or hopes for a safer solution is really operating under ulterior motives.
We are all sick and looking for answers. I don't think I am the only one who doesn't wish to die in order to be cured.
Luvs (aka: would "luvs" for a magic cure to surface before anyone else has to die from this stupid disease)
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
| IP: Logged |
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
"Borrelia spirochaetes are
*unique*
among diderm bacteria in their
abundance of *surface-displayed lipoproteins*,
some of which play important roles in the pathogenesis of Lyme disease."
Mol Microbiol. 2006 Mar;59(5):1473-84
Bb alters some of these lipoproteins when it gets into the human body in order to survive:
"The Lyme disease spirochete Borrelia burgdorferi
reduces the expression of outer surface protein C (OspC) in response to the development of an anti-OspC humoral response,
leading to the hypothesis that
the ability to *repress OspC expression* is critical for the pathogen to proceed to chronic infection."
Infect Immun. 2006 Sep;74(9):5177-84
Five years ago, we knew that Bb is capable of triggering autoimmune:
"The demonstration that the final outcome of infection is as much determined by the genetic background of the patient as by
the genetic makeup of the infecting agent
is rapidly leading to a belief that several chronic diseases of humans of unknown etiology are caused by 1 or more infectious agents.
For instance, peptic ulcers are due to Helicobacter pylori,
and at least 1 form of chronic arthritis and brain disorders can be caused by Borrelia burgdorferi, most likely through
*induction of autoimmunity*.
31 Recent data obtained in humans and animal models also suggest that mycoplasmas may cause some cases of chronic lung disease in neonates and chronic asthma in adults.31"
We have over 50 different strains of Bb, some of which have developed resistance to several abxs. and to heparin. Add on top of that Bb's ability to go from keet to cyst form within a 20 minute time frame, and we have a big problem on our hands.
How do we hit a pathogen that is capable of rapid mutations?
We all accept the fact that antibiotics are not effective against viruses, but fail to accept they are ineffective against THIS UNIQUE PROTEIN WALL pathogen.
We need to ask some hard questions. HOW does this pathogen trigger autoimmune? (Mercury is locking onto C-acetyltransferase) And why are more women than men effected? (Estrogen does look to be playing a part.)
We can't argue with genetic research. We know now EXACTLY what Bb's make-up is and the paths it takes (multiple).
With this knowledge, we can figure out how stop it in its tracks.
Bb is triggering VLDL release from the liver. We have at our disposal drugs that will halt this. These drugs INhibit an enzyme called HMG CoA reductase. We KNOW it takes high doses and TIME and is NOT without significant dangers. We KNOW magnesium does the same...without the dangers.
We KNOW Bb converts sugar to ethanol (alcohol) and uses fats. Ethanol is very harmful to the brain, pancreas, and liver. The enzymes that are needed to breakdown sugars and fats CAN be INactivated (temporarily).
We KNOW that Bb is H2O2 resistant.
The enzymes Bb is using to avoid destruction can be temporarily reduced thus exposing Bb to NO and superoxide.
We KNOW Bb is "PFK dependent" and we KNOW the things (several) that INactivate this enzyme. We KNOW insulin ACTIVATES this. We KNOW we must avoid insulin SPIKES.
We KNOW Bb wants choline. We KNOW this impacts the neurotransmitter acetylcholine. We KNOW Bb cannot breakdown acetylcholine, it needs US to via acetylcholinesterase.
We KNOW Bb is using the enzyme C-acetyltransferase, NOT N-acetyltransferase.
We KNOW choline is an important nutrient in the synthesis of bile and bile salts help to remove heavy metals.
We KNOW this disease triggers "thick blood" (HIV is the direct opposite). We KNOW that ultrasound inhibits coagulation.
We KNOW our own antibodies (fab portion) are damaged and thus don't work.
We KNOW nitric oxide and the very dangerous free radical, superoxide, are important to help eliminate this pathogen.
We KNOW that in order to divide, bacteria must oscillate (sway to and fro).
We KNOW Bb uses Mn and HIV uses Mg.
We KNOW there is a serious ATP pump problem as well as a K-Na pump problem.
We KNOW this disease is triggering metabolic acidosis.
We KNOW there are way too many free oxygen radicals and the antioxidants (esp. vitamin E) dives. We KNOW vitamin E works WITH selenium. We KNOW melatonin is a powerful antioxidant.
There is so much more that we already know...
Apply that knowledge and knock out that pathogen.
It CAN be done.
My goal has been and continues be to figure out how to CURE this disease.
[ 11. November 2006, 11:39 PM: Message edited by: Marnie ]
Posts: 9481 | From Sunshine State | Registered: Mar 2001
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Luvs said..
"This morning I read the rebuttal by the ILADS president and I was stunned to read his statement that chronic Lyme patients choose to have "quality of life albeit a shortened one". That is paraphrased, but I promise I did not alter his meaning."
Unless we are looking at different "rebuttals".. I don't see that statement in there... or anything close to it?? Can you point out where that is said... what article... and quote it for me so I can follow your post?
Thanks!
Luvs said. "This statement just stunned me. It clearly agreed that the longterm abx can be deadly but an early death was preferred by chronically ill lyme patients if symptoms could be alleviated until death."
We must be looking at different documents.. or I am just totally lost?? And if it is in there or not.. yes.. I will accept an earlier death, if need be, to keep the pain down, be able to function, to keep from deteriorating any more and having any more permanant damage.
Luvs said.. "I'm sure a few of you feel this way, but do all of you realize this is the risk you are choosing? WHY???? If death is the price you are offering up, then why not at least give holistic care a try first?"
Many of us have given holistic a try.. and while nice on a temporary basis.. it didn't work to cure us either... and allowed the organisms to replicate and cause even more damage.
A number of us who are still living have been doing this long enough to give most anything that has come our way a try. Nothing worked totally for all of us... and for me and many others.. antibiotics are the only thing that keeps us from going down the tubes... and dying.
Many of us do use other types of treatments along with antibiotics.. or use things in between too... but antibiotics for many are the only thing that has worked to stop the downward spiral... preventing immediate death... or to be so horrible we commit suicide.
Luvs said.. "I think about those of you who defend the right to bombard your children with longterm abx and I just have no words for the shock and disbelief I feel."
Actually I am stunned that someone might put their child on a special diet or use things that aren't cures... and not address active infections when they may be able to cure the child and be done with it.. as has happened to 75 percent of Dr. Jone's children.. which is approximately 8,000 children so far. I just don't see that kind of results with special diets alone.
Luvs said.. "While I knew the risk was there, I did not understand that the doctors give you these longterm abx not in hopes of curing you, but to ease your misery unto the point of death."
Once you've been trashed to the point of no return (which many of us have).. this is the only humane thing to do. Doctors don't refuse a diabetic their insullin.. so why should we be refused what works for us.
Do I wish ice cream would do as well as antibiotics? Of course. And would I NEVER want to see another antibiotic if I didn't have to? Of course. But those things don't work... so we need an alternative. One that does work for us.
Do we not give morphine to those in their final stages to end their pain? I'd rather do antibiotics than morphine any day. At least I am fairly functional that way and am not causing more permanant damge from the infections.
Yes.. there are risks.. as with anything we do in life. But I'm not ready to roll over and die because of some problems that MAY occur.. and that can be addressed if they do.
I should also explain that many of us understand we can't be cured .. so we must do our best to keep the Lyme, etc in remission, if possible. We build our immune systems.. eat right, detox, and take antibiotics to put the spirochetes into cyst forms so they don't replicate as much and cause us as much pain and problems... and continue to reproduce unchecked in our system.
Bottom line, there is no universal cure. Antibiotics may be the only thing that works for some people.
Many of us are in the last categories Dr. B explains in his guidelines.. which are rarely discussed here. We don't have a choice. It's antibiotics or die.
And whatever way we address this... those of us who have been chronically ill with multiple infections for years.. it WILL be a life long struggle.
I hope this explanation helps you to understand why condeming a persons only hope, what ever it may be for that individual.. and cutting apart THEIR life line, might sit wrong with some folks. Especially when the one condeming may themselves be on the wrong track and need to do something differently later on down the road.
We should all try to keep all options open.. use what is needed for us to remain stable or improve.. and share our information so others who come down this road will have a better chance of making it.
posted
I might as well throw another monkey wrench into the discussion.
People here seem to be forgetting that antibiotics may not be an either/or proposition -- They could be helping for multiple reasons.
1) Antibiotics are antimicrobial -- I agree with this fact. Do they kill Lyme and other tickborne coinfections? -- In my opinion they do to some extent, but they are not 100% effective -- not a reason not to use them.
2) Antibiotics are anti-inflammatory -- I don't know -- maybe? However, Hubby did not have any pain BEFORE antibiotics and now he has costochondritis and other aches and pains (inflammatory response) when he takes antibiotics that seem to help him.
3) Antibiotics chelate heavy metals including mercury -- not sure if this is true, but have been told this by a couple of alternative medicine docs. Also met at least one patient with mercury toxicity who felt that a course of antibiotics for another illness mobilized the mercury and made her symptomatic for mercury toxicity.
In my opinion, brain inflammation or mild encephalopathy is a very big factor for many patients that is not always addressed by docs. What fixes this -- IV antibiotics help (maybe orals as well), herbs help (especially Resveratrol which blocks part of the inflammatory cascade) and nutrients help (especially CoQ10 which acts as an antioxidant). Anticoagulants can also help -- they help the drugs etc get where they need to go.
I don't think any one approach is the answer. It takes multiple approaches because of the complexity of Lyme.
I am not sure, but I have often wondered if different approaches weren't needed for arthritic versus CNS presentations. If the bugs can hole up in a joint or in the brain then inflammation and pain and other symptoms will persist -- unless an herb or antibiotic can get at the spirochetes the problems will not just go away by themselves.
This is my opinion and not medical advice.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
posted
Hi, I'm a n00b. My sister and dad both have Lyme disease, and my mom is a regular visitor here, although I think she lurks more than she posts
Anyway. I'm a sophomore at Duke, and I'm going to major in Bio with a concentration in Pharmacology. My main interest is kind of neuropharmacology, but the more I read about Bb, the more interested I become. I did a project on it last year in Microbiology. Basically, it seems like it's pretty darn close to being the perfect organism. Very hard to eradicate.
What I am getting to is that I think a fresh perspective is needed. I know that there are clearly defined "sides" in this, and that it's a pretty "bloody" "battle." That's really unfortunate. I believe that both sides have valid points, and if they could somehow come together, they could make immense progress on this disease. However, it's doubtful that will happen anytime soon, because "they" have the motivation of money, which is much less effective of a motivator than the life of oneself or one's family member(s).
So here is what I propose. (There is really nothing I can do about this, but I think the idea should at least be out there (although it may very well already be.)) Instead of discrediting research done by the "enemy" because their motivation involves harming "our side," we should study both paths equally.
Sure, they're probably publishing this paper with the intent of discrediting that there is an infection. I certainly believe that my sister and father still have the infection, after years of treatment. But who is to say that there is not also an auto-immune response that is being treated by the antibiotics as well, and that if untreated would multiply the damage done by the disease?
Despite their unsavory motivations, these "enemies" are still doctors and scientists, and are not going to be submitting papers that are completely fraudulent. Biased and skewed, perhaps, but there is surely going to be some truth in there, and I think to ignore it would be foolhardy.
I don't know what can be done. I don't know if there's anything I can do. But I do think that since the two sides, who each possess their own ideas of how to treat Lyme, cannot work together, then the one side that actually cares should pick up the slack and tackle the problem from both angles. Their own, and their "enemy's."
-------------------- Posts: 6 | From DUKE | Registered: Jun 2006
| IP: Logged |
klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
I agree ALL choices should be respected, and nobody should take away another's only hope. TinCup, you and I can agree on that, even if it may be the only thing we can agree upon.
That is why I am so sad when some people imply that because I am allergic to ABX, I am definitely going to die and should just give up. I can't tell you how many posts on here have started me crying because they have made me feel so hopeless. Yet, I keep coming back here....I must be a masochist.
One person kept e-mailing me, telling me I must find a doc to put me on lots of steroids so I could tolerate the ABX I am allergic to, or I would die. She said people she knows with ABX allergy do this and feel better.
Yes, steroids may make you feel better, though they cause my yeasts and viruses to go crazy, but they are robbing Peter to pay Paul. We have our dog on them so his last few months will be tolerable, knowing they are allowing his arthritis to run wild. He can walk and play again, but he will pay a big price. ABX barely handle Lyme alone, so how can you add steroids and still expect them to work? To me, that is completly insane!
Others seem to imply that because I cannot begin to afford to remove and replace my amalgams, I will die, even though extensive Hg challenge testing on two different occassions has proven negative, and even though I know personally many people who have had them removed and done all the right holistic things along with the removal (one is a doctor) with no improvement. I also see kids with severe Lyme who have zero mercury in their mouths and do not eat any fish.
IMO, We need to keep our minds OPEN, or we are no better than the ducks we criticize. I will not take away your hope if you do not take away mine.
So, I am going to risk wading into this again, to try to explain why I am SO concerned if even one small part of this is true. Those of you on ABX do not need to worry as much about this as those of us on alternatives.
If the infection(s) are somehow triggering an autoimmune response, which keeps the sx going on and on, then taking immune stimulants like Samento, and esp. Andrographis, Cordyceps, or Astragalus, which is all people like me have to use against this, would make us much worse. What we have been calling herxes would really be a worsening of sx due to autoimmune cytokine cascade. It would not be the first time.....
I have LOTS of experience with inadvertently making myself worse, while thinking I am helping myself. I was dx'd with FMS for 17 yrs. before Lyme. I forced myself to do aerobics for an hour, 6 days per week, since I was told that was necessary for FMS. I had to take narcotics and a beta-blocker to tolerate it, but the Rheumy said anything was worth it, since FMS patients must do aerobics. This caused heart and joint damage, since I really had Lyme. I also had plenty of cortisone shots into my tender points...ditto. Inadvertently, I had done exactly the worst things I could do, because the theory and dx I believed in was wrong.
If there is any chance at all we are even partly wrong, then those of us who take immune stimulatng herbs are making ourselves worse. I have been on various Boards for CFS and FMS for almost 20 yrs. and for Lyme for 3 yrs. and only know a couple of people who were sick as long as I was without any Lyme tx who are better off than I am, even with ABX. Many are worse off than I am. It's a conundrum...
I am not sure what the answer is, and I too am shocked at how evil some people can be, but as my minister often reminds us: "No matter how flat a pancake is, it still has two sides".
Peace, Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
| IP: Logged |
Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
Anybody who has experienced Herxheimer reaction after abx (and most people on this site has this experience) know that so called 'immunomodulatory' effects of abx is a bunch of cr*p.
I don't know who has a business here to come and propagate the corrupted idea of POST-LYME SYNDROME?
[ 12. November 2006, 01:59 PM: Message edited by: Areneli ]
Posts: 1538 | From Planet Earth | Registered: Jan 2005
| IP: Logged |
posted
okay, forgive me everybody, but just a little lymebrain mood-lightener that I had to throw in here:
Tincup, when you were talking about Dr. J's "kids" I thought you were referring to like, blood-relative actual *children*. When you said how the number has reached 8,000 I was sitting here going....OH MY HECK! 8000 KIDS!!!! (Someone tell me how on earth that's possible)
Anyways, the little goof in me just had to throw that in there to give each of y'all a smile. Posts: 89 | From UT | Registered: Jun 2006
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
quote:Originally posted by Tincup: So don't be getting your nose bent out of joint.
You mean there's a JOINT in my nose too???! Haven't gotten pain and inflammation in that one yet...
I think the dangers that we face as individuals are that we are apt to sometimes,
compare ourselves to others to the point that it interferes. Sure we all are similar in that Lyme is with us but we are all also very different
in everything about how the Lyme first attacked, progressed and etc.
I have gone crazy over hearing some things people say just because I thought...NO IT IS NOT TRUE AND NOW THEY THINK THIS AND THAT ABOUT ME
when, just because it is true for you, does not mean it is true for me.
THE BIGGEST DANGER I SEE with "camp A" is the denial of the truth.
Not so much that antibiotics are dangerous long term, but that people are going to suffer tremendously due to the denial.
In reading "The Widening Circle" I learned how Dr. Steere entered the picture of Lyme, a disease that has been around a very long time but only recently got named, and so I do see and understand that his scientific way
did not correlate with the truth of the patient population and he tried to define what was happening
through his methods rather than
by evidence presented by those experiencing the disease.
For me,
antibiotics have played a huge part in saving my life as I went completely undiagnosed with anything pretending my way along until it got way impossible and nearly took my life...it got extremely severe
and I never took antibiotics. But I have taken them for a year and
NO I do not want to kill myself with antibiotics but I cannot deny the improvement that I have seen
even if it is a slow small one. It took many years to get to the point where I got,
it ain't gonna heal overnight. There are varying degrees of severity that we all face.
I do not know what would have happend had I been allergic to abx.
I am not set in any one idea and I do believe there is some truth to all of it
But when I think about the people who will and do suffer the immense kind of suffering as this on top of the disease itself....
I know many more will likely "go down" unless common ground is found.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
What do olives and grits have to do with the price of eggs?
Not a thing. But just because I don't like olives doesn't mean I won't suggest others go ahead and eat them.
Nor will I force my grits on other people either... because they may not like them.
Each of us is different.. what works for one.. may/may not work for the other.
Since there is no universal cure for this Lyme.. all of us can be wrong in what we suggest.. and all of us can be right to some extent.
I think all the posts here hold a point that needs to be considered and all of us needs to share what we've learned and hope it can help.
Klutz..
You said..
"That is why I am so sad when some people imply that because I am allergic to ABX, I am definitely going to die and should just give up. I can't tell you how many posts on here have started me crying because they have made me feel so hopeless. Yet, I keep coming back here....I must be a masochist."
A masochist? Is that the fellow who puts those little red cherries in those tiny jars before they are shipped to the bars and then are used in fancy cocktails? If so.. I am glad you are one! Those little suckers are GOOD!
Anyhow.. the suggestions here at LymeNet are just that... suggestions. Some are backed by science.. some are backed by PERSONAL experience... some by already proven theories.. or facts. Some are just plain off the wall and we ALL need to weigh out what is best for our own self.
Example.. I know the hyperbaric O2 has helped folks.. a good number of them. But if you think you're gonna stick ME in a little box and lock the door and control MY flow of breathing air.. you've got another thing coming! I don't THINK so!
I also notice that some folks who post do so in a way that is presented as if the thought is already "fact". Or they present it very strongly as they have seen things work for them and others. In that case.. you need to sift through the suggestions.. and also consider personalities of the folks posting to be able to suck out any info that may be revelent to YOUR situation.
So Klutz... I actually agree with you.. and most folks posting here. I think we all need to do what we can to make ourselves better..
Or sit back and wait another 30 years till someone else figures out THE cure for all.
I think jonnyB said it perfectly...
"I think that's the important point here. Until we have a firmly established cure that all of us can count on, anything that helps you is fair game.... antibiotics, herbs, minerals, ozone... whatever helps YOU feel better is good for YOU."
I also want to mention..
Marnie is one of the most brilliant minds on this board... always has been in my opinion. She has dedicated her life to helping folks and in a way that REALLY needs to be done. I wish we had 100 more like her out there doing 1/2 of what she can do.
So I am NOT discouting HER work here.. or her theories... NOT AT ALL.. and she is NOT from the IDSA side by the way...
But I DO see that mentioning this topic MIGHT be taken that way since the IDSA has become a fanatic on that topic and is using it against us to deny us other options and treatment.
Do I think there could be some fact in the idea the antibiotics reduce inflammation?
Might be.. but...
The IDSA is using THAT point alone.. and focusing on it... and in turn it makes it seem like NOTHING else should be addressed at all. THEY need to get a grip.. and stop using partial and unproven scientific theories.. promoting them... and using that to deny what is working for many people.
````````````````````````````````````````````````
Hey Duke...
You said.. "So here is what I propose. Instead of discrediting research done by the "enemy" because their motivation involves harming "our side," we should study both paths equally."
I propose they get kicked off the Lyme boat totally and be forced to pay back the zillions in research dollars they have sucked up promoting their one sided views.. pay back the profits from lab tests, patents, vaccines and other Lyme projects that they've made at the expense of human lives.. and NEVER EVER EVER be allowed to do ANYTHING again that will affect another human being.
THEN.. and ONLY then can we talk turkey. They have had the chance to "do right" and have indicated clearly by their actions they are not interested in doing that. It's their way or the highway.. which totally BLOWS any good we need done. We need un-biased research and unbiased studies. NOT their garbage put out there.. and being funded with OUR tax money.
Duke said.. "Sure, they're probably publishing this paper with the intent of discrediting that there is an infection."
That is exactly why they do it. Very few of their studies/papers haven't been flawed and documented as such. So get them OUT... and stop the garbage stuff from being published.. for which they then base MORE garbage stuff on. They are incredibly uncredible and biased. We need GOOD people handling the research.
``````````````````````````````````````````````` JG.. HA! Even I can't imagine having that many kids! hehehe
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
We KNOW Bb is using Mn...which is TOXIC in high levels (we only need a LITTLE of this mineral!).
WHEN our own neutrophils (most abundant WBCs -which bind zinc via calprotectin) happen on the scene - new ones are made every 3-4 weeks (timing sound familiar?)...
Are these WBCs destroying Bb, releasing too much Mn, triggering TNF alpha to counter the toxic levels of Mn -> ouch?
Wondering...
Cholesterol lowering drugs PLUS Mg and B vitamins (or CoQ10) over time...SLOWLY...to help?
Use another PKC inhibitor to "downregulate" the one Bb has that is triggering endothelial cell destruction...and the body is trying to stop this via PKC (Save the cells). Tamoxifen? Somehow estrogen (from cholesterol) does seem to be involved...calcium related.
Calcium channel blockers? Nitroglycerin? Nitric oxide inhaled? Block amylase and lipase temporarily (enzymes needed to breakdown sugars and fats) via far infrared and starve that sucker?
While too much inflammation is NOT good and is indeed harmful (!!!), it is also necessary. How low can we safely lower it? With what? Humira/Enbrel?
There is a new NSAID that is in the test mode that may help. It is called Amtolmetin Guacyl. NO (nitric oxide) is involved.
Since it looks like melatonin is helpful...is there another way to stimulate alpha waves? Is it merely melatonin or the COMBINATION of the "cold" (alkaline) blooded W. fence lizard + melatonin that was capable of destroying Bb? That combo is pH raising. More hydrogen to INactivate PFK.
The doses of melatonin that have benefitted HIV patients (T-Cell levels, NK levels improved) are shocking!
Now this is off the wall, but...
If this pathogen wants choline...what if we give it plenty...ongoing? "Lure" it into the blood stream and digestive system where yeast (which bind zinc) can "dispose" of it?
Since lyme patients are already acidic, the idea of displacing Hg via selenium instead of trying to dissolve it with acids looks to be more appealing, given the need for this antioxidant anyway. How much, how often? With vitamin E at mealtimes?
(Once displaced, it is important to eliminate Hg so it is not recirculated, hence the importance of the nutrients needed to make bile.)
IMO...our body showed us from the "get go" what it needed to fight. Mg came "off" ATP and went into general circulation. Not Mg citrate or Mg sulfate...or any other compound. JUST Mg.
Now, the Romanian doctors did cure TWO EARLY onset lyme patients via large IV doses of a Mg compound (I do not know which one), but the fact that they did, is very interesting!
Mg is needed to make HEALTHY antibodies...along with Ca. Mg is needed to INactivate PFK. Mg is needed to INactivate HMG CoA reductase. Mg is an anti-inflammatory.
The list goes on.
I don't think we had enough to "spare" fast enough.
IF abx. are indeed "anti-inflammatory" they have to be working one of 2 ways. Either they are alkaline or are acidic enough to "downregulate" other acid(s) TNF alpha. Since we are told they deplete minerals and some vitamins, that would look like they are "acidic".
Normally acidic things (negative charges) DO rid all pathogens and do destroy infected cells (radiation for cancer, for example).
What this all boils down to is: we need to look closely at what Bb is doing, what it needs and the paths it is taking, as well as how our body is responding to fight, and APPLY that knowledge to figure out a way to stop it.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
| IP: Logged |
AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Well abx are keeping me out of pure HELL.
I also use some supplements.
This combo is making me better. But mostly the abx. If I am off them a few days... I spiral back down into the abyss.
Without the abx would I probaly be alive..yes most likely I would live.
But everything I am, every hope and dream I had for my life, my goals, the core of my being
would be obliterated by the severity of the pain, fatigue and what other of the myriad of symptoms I have expereinced decided to join the party.
Lyme can completely take your life...without killing you.
And I intend on going into remission. I dont think you can cure CHRONIC lyme. I think like cancer pateints that go into remission some are lucky and the cancer doesnt come back...
same with us.
This is why it upsets me when I have seen posts that say something like anyone who uses ketek is an idiot.
We all have weigh the risks and benefites. When you have had EVERYTHING taken away but your ability to exist (in an existance NO ONE would want)
the risks to abx far outwiegh the horrors of life without them.
Having said that I support whatever path anyone choses to follow, herbs rife anything if it helps them have a better life.
I hope people on herbs know that some herbs have risks too. which is why I dont understand why some herb users knock abx users.
So good luck to us all. And I hope no matter what path we choose we all reach the destination of better health.
klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
This is a very provocative thread and that is wonderful.
You are so right that herbs have risks! So do nutritional supps. I am allergic to just as many of them as drugs and bugs, etc. I hope people will educate themselves before taking herbs.
The quinine herbs can make me stop breathing just as quickly as the quinine drugs. I have almost had to go to the ER over several other herbs that are widely assumed to be harmless.
Note to those allergic to Ragweed.... watch out for that chammomile! If you are allergic to bees, please avoid bromelain! ALL ginsengs raise blood pressure...don't let anyone tell you ohterwise. This may be good if yours is low, but if not, watch out. Same with DL-Phenylalanine, which is great for pain and depression, but it raises BP, a lot.
One herb that is known to be harmful but is in a popular natural Lyme tx is chaparral, which put me in the hospital with gallbladder sx. It has been known to destroy the liver. The tx it was in, called MOH Lyme sets #173, also caused my Potassium to become dangerously high and I had to be treated for that in ER as well. I took it because 3 holistic docs pushed it at me, and because, like many of you, I am desperate.
I am not saying my herbal path is better. It is simply the only one left to me, other than just enjoying the time I have left, which I would be seriously considering, except that there is nothing enjoyable about the Living Death that I exist in. I empathize completely with taking calculated risks.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
| IP: Logged |
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
I just read this thread and got very discouraged.
Thanks a lot, guys. Posts: 2903 | From AZ | Registered: Feb 2006
| IP: Logged |
GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
All I can add to this is that I have yet to meet the patient with Lyme Disease who got well simply by taking antibiotics and the standard type supplements. By now, I know many of these patients. Not a single one was able to lick this disease in that way.
I wholeheartedly agree that Lyme Disease should be recognized as what it really is: a miserable condition if it hits you and we should be able to get all the treatment necessary.
But beyond that, all the hysterics don't lead to the cure.
We have to recognize that Lyme Disease is a multi-factorial disease that takes hold when we are ``contaminated'' enough, toxic enough that our body is unable to defend itself any longer. I don't know of any chronic disease that does not have a similar base. Any cancer patient I have seen get well had to do cleanup work for several years, even if more severe therapies are also employed. No cancer patient in my doctor's practice keeps a root canal in his/her mouth! Neither does a Lyme patient who wants to get well keep a root canal or amalgam fillings.
I have never seen a patient get better or get well without addressing all: Toxic body from environmental toxins; worst being a toxic mouth from dental work and toxic brain therefrom. Parasites. Fungi. Mold. Genetics rarely. Electromagnetic exposure. Geopathic stress. Structural problems. Toxic lifestyle. Unhappy lifestyle. Emotional burdens and unresolved conflicts. Fear. Stress. Mental toxicity. Mind.
Lyme Disease will not be cured unless most if not all of these contributing and mostly pre-existing conditions are resolved.
I had to address all of these, some very briefly, in order to be cured from Lyme Disease. Biochemistry is not the sole solution. I appreciate Marnie's efforts very much, even though I understand little of it. Not trying. There is more to the human body than biochemistry.
We are surrounded by many people who do not have Lyme Disease, even though the exposure possibilities are widespread. Billions of people do not have Lyme Disease, millions in Connecticut or Long Island do not have Lyme Disease. Only Lymies seem to think that way.
I was delighted to hear that some of the doctors at the last ILADS conference are starting to see it a bit more the Dr. K. way: at least they now seem to understand that heavy metal toxicity plays a key role in Lyme Disease.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
| IP: Logged |
klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
A perfect case in making my previous point. Now you can see why I sometimes want to take my Colt 32, put it to my head, and pull the trigger after reading posts here.
Do NOT take away my hope, da*n it all! Opinions are just that, opinions, unless of course, you happen to be the second coming?
I feel a Lyme rage coming on.....bye, y'all...
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
| IP: Logged |
posted
Azure and Klutzo, I take herbs and have for a long time. I know they have risks, but I have found to get really good information on them to be very difficult.
I have countless books on herbs and herbal remedies, plus usually do a long google search on them before buying them. I rarely find much information on them. No one really is doing much research. Do you have a good source?
Posts: 48 | From Wisconsin | Registered: Sep 2006
| IP: Logged |
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Hi Tincup,
I searched and searched and could not find again the article I read by Dr Rapael Stricker where he said the ISDA does not take into consideration the chronically ill patient who will choose improved quality of life with abx albeit a shortened one. I'm sorry I didn't save it.
Those of you who know him, just ask him if he said it. If he did, he will admit it. After all, it is an act of mercy much like giving morphine to a dying person. If he was misquoted, he deserves a chance to set the record straight.
Now, Tincup, you were mostly polite in your response and I appreciate that; but you did insinuate two things that offend me. You insinuate I am misleading people with ineffective treatments and that my lyme disease is somehow less severe or inferior to yours and many others. Please let me respond.
1-I was bit 10/95 and was treated for 6 mths with oral abx after which I seemed cured. Little did I know that the ills I would incur over the next 10 yrs would simply be the Lyme still at work in my body. It took 10 yrs for me to fall, but in 8/05, fall I did to crippling migratory arthritis. By this time, I was also suffering severe mental fog, hot flashes, years of migraines, stiff neck, hearing loss, 5 root canals. DON'T INSULT ME BY SAYING I'M GETTING WELL BECAUSE MY LYME WAS MILD OR INFERIOR! Maybe for just a moment you can join the "other" camp and tell me my lyme is all in my head and that is why alternative care is curing me.
Nor did I run down to the local healthfood store or Shaman to get treated. All along I have been working with medical doctors who are very lyme saavy. They believe in chronic lyme infection and disagree with the effectiveness of antibiotics.
Under their care, ALL my symptoms except the arthritis are gone. It is heaven to have my mental capacities back and the arthritis is so mild now I am enjoying all the activities I ever did. I have great hope one day the arthritis will be in full remission. I'm still in the battle to clear my body completely. But like others have said, I believe remission is the goal, not cure.
I am not against abx. I believe they have their place too. I also can understand how some would be so sick and desperate for a life as to take whatever they must to feel better. I'm not against that. But be honest about it. Clearly state and warn everyone of the potential dangers so they make an informed decision. Too often the dangers are shoved aside. Most people think abx cure and they don't understand or believe the dangers of the abx. In those cases, they are bombarding themselves and their children unto the point of death never realizing the danger.
Many are not so sick as to choose potential death. As for alternative care, we all need to improve the health of our bodies so our bodies can fight the good fight. We need to do that especially if we are on antibiotics. We all know abx are indiscriminate. They destroy both good and bad bacteria so we need to keep adding good bacteria back in and don't do anything to hinder the work of the abx. More research dollars should be poured into this direction.
I know you love ice cream. I do too. But do you know that sugar suppresses the immune system? Do you know sugar feeds yeast and cancer cells? Do you know sugar creates an acidic environment? So when you take abx (or alternative) and you eat sugar you are pushing on the gas and the brakes at the same time and virtually going nowhere.
I agree whole-heartedly with you Tincup and everyone else who says we need both abx and alternatives and each should do what works best.
Now, would anyone like to talk about abortion or religion?
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
| IP: Logged |
quote:Originally posted by Marnie: What this all boils down to is: we need to look closely at what Bb is doing, what it needs and the paths it is taking, as well as how our body is responding to fight, and APPLY that knowledge to figure out a way to stop it.
YES!
HOW DO WE DO THIS?
The thing is...the paths are in different zones.
Some of us come from a genetic inheritence of arthritis, shizophrenia, Alzheimers, etcetera and so the spirochette meets these inherited genes which are same and also unique.
__________________________________________ EDIT:
As well...I THINK THE MAIN QUESTION IS...
IS IT STILL AN ACTIVE INFECTION? OR IS IT DAMAGE DONE AND AUTOIMMUNE? WHAT DO YOU THINK? ___________________________________________
Also with the zones, there is onset of tick attachment and time it took to manifest the progression of symptomatology. For me, onset was in 1975 in MA, very close to Lyme...and being only 10 yeras old...I had NO CLUE and continued to have NO CLUE until diagnosed in 2005. It took ALL THAT TIME to embed.
I cannot receive information or figure out the simplest things or recognize faces of loved ones and for a long time just thought I had some sort of autistic spectrum disorder.
I completely closed down in my brain for two or so years, did not even have the energy to retrive anything for speech in response. I mean...that time zone, along with myraid other extremely bizarre and frightening things....is not the same zone I am in now.
I don't know if this means the Bb has gone partially dorment into cyst. I certainly have a plethora of continued symptoms that incapacitate me.
I do think that there will come a time to decide that the abx have done their duty and even if I might continue with symptoms...it will be time to let them go and continue with the many other parts of healing this illness. Like what GiGi suggests and compares to the cancer patient who, undergoes harsh treatments, but must also blend much more in the overall picture of healing.
I still very often feel as if I will die from it deep in the night alone in extreme pain and throwing up with fever and chills. I would like to get to a point that I can receive and figure out things.
quote:Originally posted by GiGi: We are surrounded by many people who do not have Lyme Disease, even though the exposure possibilities are widespread. Billions of people do not have Lyme Disease, millions in Connecticut or Long Island do not have Lyme Disease. Only Lymies seem to think that way.
Hi Gigi,
I have to agree with your ideas about comparing Lyme to cancer in treatment in that there is a time for the aggressive employment of chemo, radia, and for Lyme...antibiotics. There is DEFINITELY at time for that when it truly is a life or death decision...
Although, that does not mean that there are not OTHER things we can ingest, such as herbs, that might be or have been just as powerful.
I do believe some of those herbs are JUST AS potentially TOXIC as the abx.
At the same time, I have to say, I had my amalgams removed and no root canals and it has done nothing to help my face/teeth nerve pain.
I wanted to point out the above quote because I am not sure I understand your motivation.
Some people are working from a political fight point of vew and we need those people to get things shaking for people so that treatment will be available.
Some people respond from the bartonalla like emotional standpoint and I think this is the disease talking and a feeling of helplessness with the encompassment of the disease which, some people are completely swarmed with.
I realize there are many thousands and millions who do not have Lyme and I hope that those who don't not are not judging those who do, as if they do not either. I know I am not any weaker than the person who does not have it. It is just the path of my life for whatever reason...that makes me human.
...There is a very deep psychology that comes along with being stigmitized by society, family, doctors like many with Lyme are and I think often times,
we tend to be responding from that in an effort to prove the validation of our own existence with this disease, which may seem like hysteria, but is a basic part of the condition external to to the disease but also a contributing factor in how we respond.
For myself...it is a large part of the emotional aspect you speak of that needs healing. It's not junk. It's really true.
Anyway, I don't know if I will ever fully recover from this, but I do know that I will do the IV if new LLMD tomorrow says it will help me process and recognize things. I also know that I will cut myself off from the abx aspect after that and continue on the road to the rest of the healing aspects.
GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Painted Turtle,
"At the same time, I have to say, I had my amalgams removed and no root canals and it has done nothing to help my face/teeth nerve pain."
Sorry you went to the trouble of removing your amalgams and did not continue right on doing what is necessary.
The removal of amalgam from the teeth is only a tiny fraction of the job. The major work should follow the removal: i.e. to go on a thorough heavy metal detox program under the guidance of a professional who knows how.
The mercury that escaped from the first momen on when you had your amalgams done until the day you removed the amalgams, the mercury started to escape. It is still somewhere in your body, most likely the brain, and elsewhere in the matrix of the body. It escapes with chewing, hot and cold, in a vapor form, moves via the nerves/tubulin into other areas. The closest nerve for nerve connection is the brain. It changes there into another solid form of mercury. That is where it is doing the major damage and that is the reason we need to remove it.
It's sad that your dentist did not inform you of this.
Mercury is toxic anywhere in the body and getting well with it in the body takes a miracle.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
| IP: Logged |
GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Painted Turtle,
"At the same time, I have to say, I had my amalgams removed and no root canals and it has done nothing to help my face/teeth nerve pain."
Sorry you went to the trouble of removing your amalgams and did not continue right on doing what is necessary.
The removal of amalgam from the teeth is only a tiny fraction of the job. The major work should follow the removal: i.e. to go on a thorough heavy metal detox program under the guidance of a professional who knows how.
The mercury that escaped from the first momen on when you had your amalgams done until the day you removed the amalgams, the mercury started to escape. It is still somewhere in your body, most likely the brain, and elsewhere in the matrix of the body. It escapes with chewing, hot and cold, in a vapor form, moves via the nerves/tubulin into other areas. The closest nerve for nerve connection is the brain. It changes there into another solid form of mercury. That is where it is doing the major damage and that is the reason we need to remove it.
It's sad that your dentist did not inform you of this.
Mercury is a deadly toxic anywhere in the body and getting well while it is still in the body takes a miracle.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
| IP: Logged |
quote:Originally posted by Tincup: ````````````````````````````````````````````````
Hey Duke...
You said.. "So here is what I propose. Instead of discrediting research done by the "enemy" because their motivation involves harming "our side," we should study both paths equally."
I propose they get kicked off the Lyme boat totally and be forced to pay back the zillions in research dollars they have sucked up promoting their one sided views.. pay back the profits from lab tests, patents, vaccines and other Lyme projects that they've made at the expense of human lives.. and NEVER EVER EVER be allowed to do ANYTHING again that will affect another human being.
THEN.. and ONLY then can we talk turkey. They have had the chance to "do right" and have indicated clearly by their actions they are not interested in doing that. It's their way or the highway.. which totally BLOWS any good we need done. We need un-biased research and unbiased studies. NOT their garbage put out there.. and being funded with OUR tax money.
Duke said.. "Sure, they're probably publishing this paper with the intent of discrediting that there is an infection."
That is exactly why they do it. Very few of their studies/papers haven't been flawed and documented as such. So get them OUT... and stop the garbage stuff from being published.. for which they then base MORE garbage stuff on. They are incredibly uncredible and biased. We need GOOD people handling the research.
```````````````````````````````````````````````
Don't get me wrong, I'm not exactly advocating that the two sides work together, because I know how hostile the IDSA people can be, and how incredibly biased they are. I mean, I know an ID doctor at UNC who is literally the reason I am alive today - he got me into the hospital there when I was hours away from dying of a perforated colon (Ulcerative Colitis) and was 11th in line for admission. He's a really great guy. However, the second my mom mentioned Lyme Disease to him a couple days later, the wall went up and communication has been difficult with him ever since, despite his being a very good friend of my grandmother. My mom has also had numerous instances of confrontation with these people.
What I am saying, however, is that the research they have done, despite their motive, is not entirely without validity, and we need "good" doctors who are willing to consider both sides - both scientific sides.
Maybe years down the road, when doctors and researchers who are actually working for their original purpose, TO HELP PEOPLE, have gotten far enough to where the IDSA-type stance seems absolutely ludicrous to everyone, both "political" sides will be able to work together, because there is no denying that the government's backing, specifically the money that would come with it, would do wonders for actual legit research.
Sorry if you misinterpreted what I was getting at
-------------------- Posts: 6 | From DUKE | Registered: Jun 2006
| IP: Logged |
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Like Gi Gi and others have said, this takes an
all out commitment to get well.
If you will not give up unhealthy food and drink choices, get some fresh air and a little sun exposure, keep moving, and change your "mindset", etc., healing will be impossible.
Jumping from one thing to another on a weekly or monthly basis and concluding it doesn't work is illogical.
It takes a LONG time to clear this infection and for the repair to begin.
The body heals SLOWLY.
Driving this pathogen into a cyst form is very undesirable.
Antibiotics do INDEED alter our body's chosen immune response:
"These results indicate that TETs are not able to act directly on the synthesis of these cytokines, but they may modulate other pathways that could in turn be responsible for the inhibition of IL-1 alpha and TNF-alpha synthesis."
...evidence of the augmentation of immune responses by tetracyclines... This is the first study to show an effect of antibiotic therapy on cytokine levels in vivo.
PMID: 8331300
TNF alpha is PROTECTIVE from many, many respects, but too much is HARMFUL. I have listed the BENEFITS of TNF alpha many times.
IF Bb is using VLDL (very low density lipoproteins - think of it as "baby" cholesterol) to
form its cell wall,
we MUST halt VLDL release from the liver and then get our needed nutrients from UNsaturated fats in our diet. We must have some cholesterol for all our cells. VLDL -> LDL + calcium = plaques too.
We HAVE to keep Bb from forming cysts. They are next to impossible to rid.
When reading the above...a "history" of cyst research over several years, please note that the lipoproteins are triggering the T-lymphocytes (too much so). To downregulate this Th1 pathway...
Think far infrared. NOT once a week or "on occasion"!
If you have a virus emerge and your body switches to the Th2 pathway... think instead blue light (more powerful).
Posts: 9481 | From Sunshine State | Registered: Mar 2001
| 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!
![[Smile]](smile.gif)
![[Big Grin]](biggrin.gif)
![[Razz]](tongue.gif)
![[Wink]](wink.gif)
![[kiss]](graemlins/kissing.gif)
![[dizzy]](graemlins/dizzy.gif)
![[group hug]](graemlins/grouphug.gif)
![[Frown]](frown.gif)
Printer-friendly view of this topic