It doesn't make a lot of sense to follow the exact same protocol unless someone has the d-25 problem...otherwise why stay out of the sunlight? Sunlight really helps me and always has. It's the cold grey winter that is a problem for me.

ALso, in reading some of the threads on the sarcinfo website (there are a ton so I read kind of randomly) I found one where people were posting their ratios, and there was a wide range. Some were really rather normal, in reference ranges and ratios. An occasional person was WAY off the charts. I'm not sure, were one to really analyze the data, if there wouldn't be a bellcurve range among sarc patients--just the way those 9 patients, 6 of them got better with Vitamin D2 as a precursor (which as I said, I have questions about). I cannot figure out what that means, except maybe adding in a different form of Vitamin D helps quiet the inflammatory form.

Vitamin D is very important--unless a person has the inflammatory metabolite, staying out of the sun adn avoiding Vitamin D could be harmful to health.

He likes minocycline plus zithromax...

THe low dose appeals to my basic viewpoint, which is that some people in lymeland, WAY overdo the antibiotics, as if their bodies could really handle all that toxicity so easily...

I don't see why I can't apply the ozone protocol instead of antibioitcs and it will get rid of fungi as well...so I am mostly interested in this in a theoretical way.

I'd like to know the answer too to Byron's question about viruses, since someone pointed out they react the opposite to benicar...can be stimulated.

Another question I have, which is probably not answered due to my lack of thoroughly researching this...the idea with sarc is that you are genetically predisposed to react with an inflammatory cascade to certain microbes. Now, once you run into one of those microbes, and start forming granulomas, you have a place in the body where microbes can flourish. Then any microbe you run into, at least some of them will be able to hide in and flourish in the granulomas, leading to a multiple-microbe infection. This seems to be his reasoning. And the benicar, by stopping inflammation and d-25, allows the body to start working again and somehow dissolve the granuloma? I'm still a little unclear on this, but apparently the granuloma is key.

So, nobody knows in lyme how important the inflammatory cascade is, to perpetuating the illness. Scott is saying its the missing link, but I'm not so sure myself. For instance, lyme changes its outer antigens, fooling the immune system constantly, while keeping the main 6 antigens hidden. That's one way it evades being eliminated thoroughly. It also hides in cells where obviously it's harder to reach. IT also goes into dormant forms, cysts and granules, that are hard to kill.

I haven't seen an explanation of how intracellular microbes (which he clearly is aware of and includes) are somehow benefitted by benicar in a person with lyme who does not have eleveated d-25, and does not have granulomas. That's why the comment about the peptides interested me. I have seen some research on fungi for instance that is entirely experimental but shows that if you can inhibit certain enzymes they use, antifungal drugs become incredibly more effective. Perhaps there is a mechanism by which benicar is helpful that has nothing to do with d-25.

Q: It appears that Marshalls protocol calls for working up to taking 120 mg a day...

A: I started directly on the higher dose...but keep in mind, I'm already in pretty good shape before I started, so I would caution anyone not to do it my way unless they are already in good recovery of lightly infected. Those that are seriously involved need to be cautious with Benicar...not due to the BP effect but because of the strong immuno-modulatory effect.

Q: Was that Marshalls recommendation for lyme patients as well? Or are there other criteria he is using such as testing, symptomatic improvement?

A: His recommendations are basically the same for borreliosis as they are for sarcoidosis...remember these are often one in the same.

Q: It sounds like from what you shared that there is more info...to be released by Marshall...does this info affect the use of the protocol Scott?

A: No, not the protocol...the new info he's going to publish regarding Benicar is involves more detail in the action of Benicar in these infections.

Q: Also, am still wondering if the whole protocol should be followed..seems thats where he got the results, ie, testing, ramping up of drugs, avoiding sunlight,removing vitamine D from diet...

A: Not a bad idea...but I'm not sensitive to sunlight and with Benicar giving me A-II blockade, I probably don't have to be as strict.

Q: ...Or is Dr. Marshall recommending a less stringent protocol for lyme...seems like what you are doing is limited to just the benicar and Mino...

A:...he's recommending the same protocol...I've just concentrated on the major factors which are the Benicar and the abx. But, please remember...I'm lightly infected at this point and after 7 days on Benicar having very few symptoms. Other more seriously infected must be addressed differently.

Q: I have a very real question about how one who is already taking several antibiotics, to deal with co-infections begins this protocol. I am not sure I would want to stop everything and start over.

A: This is where caution is prudent...please note that Benicar is a potent immuno-modulator and can dramatically improve the way your body can kill pathogens, especially in the presence of abx...if you are a severe case and are taking large doses of abx and then add Benicar you could be taking the risk of a severe and dangerous herx reaction.

If you are a severe case, it would be prudent to go off of abx and let the doses clear your system before beginning Marshall's protocol.

Extinguish the inflammation and get the immune system working first...then gradually bring in the abx. This is a much safer approach and will prevent unwanted reactions.

could you describe other than the Benicar and minocycline, what things you are taking - other med's, supplements etc...?

also, what were your symptoms prior to adding the Benicar?

"if you are a severe case and are taking large doses of abx and then add Benicar you could be taking the risk of a severe and dangerous herx reaction"

Originally you were saying that the symptoms of lyme were due to inflammation/BLP's that benicar could modify. These symptoms/inflammation *WERE* the disease, in a sense. We can live peacably with microbes that don't generate these, apparently.

I am confused about how that insight, which would tend to indicate that benicar ameloriates a herx or symptoms, aligns with the idea that benicar is not only a potent anti inflammatory but improves the functioning of the immune system to the point where more microbes will die and there will be a worse herx.

Much about this still seems contradictory to me, or I don't understand it well enough: the d-25 ratios vary widely even in sarc; the response to precursors like Vitamin D2 varies and in 65% of the cases in that pilot study, improved or went into remission with Vitamin D2 as a precursor, confusing me about the D-25 idea as a key and reliable marker in all sarc cases and maybe some lyme; the benicar either quenches inflammation and BLP's or it doesn't...if the former, a herx should be ameliorated as with enbrel or the stuff Marnie's sister is on (forget the name)...

I apologize for making this confusing...I'm trying to keep it as simple as possible for folks to understand.

We need to understand the significant immunodysfunction that this disease causes during the inflammatory cascade. Once this cascade is corrected the immune system can unleash a potent response, killing a lot of pathogens and producing severe herx reactions...especially in the presence of abx.

This is why Marshall's approach makes sense...start by correcting the immune system first and then add the abx.

Now, I was able to tolerate both at the same time...but remember I was fairly well on the road to recovery. Others severely involved will have different experiences than mine.

However, I'm confident that Marshall's protocol will provide significant improvement in many if not all Lyme suffers, and that this improvement will occur faster than with conventional Lyme therapy.

Scott

Email me and I'll send a report.

A: This doesn't appear to happen ...especially with the bacteriostatic abx such as the tetracyclines, macrolides, lincosamides, and cotrimoxazole."

Not true. The cyst forms are "antibiotic resistant". It is far, far harder to knock those out.

The following abstract indicates that in a NUTRIENT DEFICIENT medium, when given abx., Bb goes into a cyst form. Less with the tets, but I don't want ANY to go hide out. Do you?

Rocephin causes cyst formation of Bb

Cystic forms of Borrelia burgdorferi sensu lato: induction, development, and the role of RpoS.
Murgia R, Piazzetta C, Cinco M.
Dipartimento di Scienze Biomediche, sez. Microbiologia, Universita degli Studi di Trieste, Trieste, Italy. [email protected]

It has been demonstrated recently that cells of Borrelia burgdorferi sensu lato, the etiological agent of Lyme disease, transform from mobile spirochetes into nonmotile cystic forms in the presence of certain unfavourable conditions, and that cystic forms are able to reconvert to vegetative spirochetes in vitro and in vivo.

The purpose of this study was to investigate the kinetics of conversion of borreliae to cysts in different stress conditions such as ***starvation media*** or the presence of different antibiotics.

Using the same experimental conditions we also investigated the possible role in cyst formation of RpoS, an alternative sigma factor that controls a regulon in response to starvation and transition to stationary phase.

We observed that beta-lactams penicillin G and ceftriaxone, the antibiotics of choice in Lyme borreliosis treatment, favoured the production of cysts ***when used with serum-depleted BSK medium.***

In contrast, we observed a low level of cyst formation in the presence of macrolides and tetracyclines.

In order to elucidate the role of the rpoS gene in cyst formation we analyzed the reaction of the rpoS mutant strain in comparison with its wild-type in different conditions. Under the same stimuli, both the wild-type borrelia and the rpoS knock-out isogenic strain produced cystic forms with similar kinetics, thus excluding the participation of the gene in this phenomenon.

Our findings suggest that cyst formation is mainly due to a physical-chemical rearrangement of the outer membrane of Borrelia burgdorferi sensu lato leading to membrane fusion and controlled by different regulation mechanisms."

The ROOT of the problem is that our level of Mg (as evidenced by the Romanian abstract) SEVERELY depleted our Mg levels. SEVERELY.

The abx, Rife therapy (frequencies), heat, acids, Toxins - all have a neg. charge. The body, to maintain the pH balance, WILL pull additional minerals out of storage to compensate. Furthermore, Ca and Mg are needed by our own immune system to form HEALTHY antibodies. On top of this...Bb uses Mg in its own enzyme reactions (according to microbiologist Dr. Gary Kaiser).

More documentation:

Characterization of the physiological requirements for the bactericidal effects of a monoclonal antibody to OspB of Borrelia burgdorferi by confocal microscopy.

The bactericidal effect of Fab-CB2 is not dependent on the induction of spirochetal proteases but is dependent on the presence of Ca2+ and Mg2+.

Supplementation of Ca2(+)- and Mg2(+)-free medium with these cations restored the bactericidal effects of Fab-CB2.

The mechanism by which a Fab fragment of an antibody destroys a bacterium directly may represent a novel form of antibody-organism interaction.

PMID: 9125579

Without enough Mg, our own antibodies are "unhealthy" (Fab portion) and this is one of the reasons (there are many) that TNF alpha steps in. TNF alpha helps to get rid of unhealthy antibodies.

Once again, it is a SEVERE depletion of magnesium that is the root of the problem and this absolutely spirals out of control.

The "side effects" of Humira ($$$ shots) are TB and cancer. Humira is given to COMPLETELY block TNF alpha. You may indeed FEEL better, but watch out.

quote:

---

Originally posted by hwlatin:
Riversinger

I have a very real question about how one who is already taking several antibiotics, to deal with co-infections begins this protocol. I am not sure I would want to stop everything and start over.

---

I agree. I've been trying to ask Marshall about this, but he tends to sidestep that question. My particular concern is babesia.

It sounds to me as though someone on high dose, multiple abx would have a severe herx when starting benicar. Marshall does say the 1,25-D levels have some predictive value for how extreme the herx might be, but it would still make me very cautious.

I think if you are improving on your current protocol, there is not much reason to look at this.

I'm currently only on one abx, omnicef. Usually omnicef is used with a macrolide, but I couldn't tolerate them at the recommended doses. I'm a little concerned because I know without the macrolide, omnicef is likely to encourage cyst formation.

This is part of why I am looking into this new protocol. But I agree with you, there are a lot of unanswered questions, and I don't think anyone should step into it blindly or casually.

quote:

---

Originally posted by Byron2:
Thanks Riversinger...
I would be curious to know how he deals with people that have viral infections...

---

Byron,

I don't know much about how Marshall handles viruses. I have seen in one of his papers that fungal and viral infections, cancer, and AIDS can all be reasons that someone's 1,25-D tests would come back low. These switch the immune system over to Th2 dominance.

In that case, I imagine the protocol might have to be changed, but I haven't seen anything as to how.

You might want to ask him some of these questions yourself. he seems pretty open, though he doesn't always reply to the exact question you ask. He is only one guy, answering all the questions for free.

Plus, if we flood his board, he might get less cooperative. So I recommend reading his papers first, so you know what to ask.
www.sarcinfo.com

quote:

---

Originally posted by jen13:
It doesn't make a lot of sense to follow the exact same protocol unless someone has the d-25 problem...otherwise why stay out of the sunlight?

---

I agree. I think if people consider following this protocol, they should get the testing done. That way, we would find out if some, most, or no Lyme patients have elevated 1,25-D.

I decided to experiment with the reduction of sun in my eyes because of what Marshal told me about its effect on neuro symptoms. I figured a week won't hurt me, and once I get the tests, I'd have a better idea as to whether it is an issue for me.

But I definitely wouldn't restrict dietary intake, or restrict sun exposure for an extended time, unless it was clear the 1,25-D was high.

Scott,

A difficult question, as Sarc patients generally have not reported orthostatic intolerance. Cardiac manifestations are frequent, but tend to be due to changes in the 1,25-D level due to light exposure or food ingestion. Particularly as a result Vit D supplements or taking vitamin pills. There hasn't been a lot of discussion yet about the importance of 1,25-D to chronic Lyme patients, but it is not only responsible for the production of the inflammatory macrophages, but also for facilitating or blocking the entry of pathogens into the cells. There is a section in our new paper about that (still a week or so away from completion, I am afraid)

Benicar has potent anti-fibrotic properties, and it certainly tends to block bacterial protein/peptide production.

Here is an article from PubMed. Keep in mind all science posted on PubMed is not good science and severe conclusions shouldn't be drawn from just an abstract, BUT, DAMN!

JAMA. 1998 Feb 18;279(7):532-4.
Related Articles, Links

�
Hypercalcemia due to endogenous overproduction of active vitamin D in identical twins with cat-scratch disease.

Bosch X.

Internal Medicine Unit, Hospital Casa Maternitat, Corporacio Sanitaria Clinic, Barcelona, Spain.

CONTEXT: The extrarenal synthesis of active vitamin D sterols has a central causative role in the hypercalcemia associated with various granulomatous diseases. OBJECTIVE: To study the calcium metabolism in patients with cat-scratch disease who have hypercalcemia. DESIGN: Case report. SETTING: University hospital in Barcelona, Spain. PATIENTS: Two identical twins who developed asymptomatic hypercalcemia during the acute phase of cat-scratch disease. MAIN OUTCOME MEASURES: Serial measures of calcium homeostasis and metabolism over a 2-month period. RESULTS: On admission and 6 and 7 days later, both patients were found to have increased levels of serum and urinary calcium, serum phosphate, and serum 1,25-dihydroxyvitamin D [1,25(OH)2D], whereas they had normal values of serum 25-hydroxyvitamin D and urinary cyclic adenosine monophosphate and decreased serum concentrations of intact parathyroid hormone. Sixteen and 20 days after admission, these abnormalities had resolved without treatment. A direct correlation was observed between the serum 1,25(OH)2D levels and both the serum and 24-hour urinary calcium concentrations. Also, the concentrations of calcium and 1,25(OH)2D paralleled the clinical activity of the infectious disease over the period these parameters were measured. CONCLUSIONS: Our cases provide evidence that cat-scratch disease can produce hypercalcemia through the unregulated production of the metabolite 1,25(OH)2D. Cat-scratch disease should be added to the list of granuloma-forming diseases that are responsible for 1,25(OH)2D-mediated hypercalcemia.

Publication Types:
Case Reports

PMID: 9480364 [PubMed - indexed for MEDLINE]

Some of you may not find this relevant until you know two things:

JAMA-Journal of American Medial Association

Cat Scratch Disease- BARTONELLA!

In addition, Ca and Mg are needed to fight Cancer, a virus...

Antibody Dependent Killer (K) and Natural Killer (NK) cells (ASCC) kill by extracellular cytotoxicity by binding to a target cell and secreting cytolysins which unidirectionally kill the target cell. Once the target is bound by an NKAR and no NKIR is activated, the cytotoxic reaction occurs.

The interaction of cell adhesion molecules between NK and the target cell may tighten the attachment. The first step is a MAGNESIUM DEPENDENT movement of the cytoplasmix organelles (Golgi and granules) of the NK cell to face the target cell.

The secretion of the granule contents into the intercellular space is a CALCIUM DEPENDENT step that results in the preferential insertion of perforin pores into the target cell membrane."
http://www.microimm.mcgill.ca/coursenotes/513NKILL-Note.pdf

The above link does not work anymore. However, since these are ``course notes'', I will assume this is ``common knowledge'' at the college level for those studying microbiology/immunology.

It seems there must be magnesium AND calcium present for the NK cells to do their job.

"Author: Admin (---.vnnyca.adelphia.net)
Date: 12-06-02 06:29

Magnesium and Calcium are un-important until you get your 1,25-dihydroxyvitamin-D level down below 36 pg/ml (approx).

While it remains high you are wasting your time worrying about magnesium and calcium.

I eventually got my 1,25-D down to 13.5 pg/ml (remission) and I can now take a supplement with a little Vitamin-D, Calcium, and Magnesium in it. But until you get your 1,25-D down your attempts at nutritional balance will be fruitless.

..Trevor.."

This is assuming you have high levels of D. If you don't, then it may be another story. We don't really know if high D applies to PWC or lymies yet. Whatever the case, he's not saying NOT to supplement with magnesium, just that it's not going to do much until you address the other issues, of which excessive vitamin D is one indicator.
I've been supplementing with magnesium for ages, I love magnesium, I wish I could say I've been cured. I can't.

My own take on Dr. Marshall's work, which fits with my own thinking, is that we've gone beyond the point of no return here with these pathogens, and normal measures no longer are enough. If we'd caught them early, perhaps things would be different, but at this point, they've taken over, and until we find a way to give our immune system the upper hand, most of our efforts amount to little more than throwing pebbles at an advancing army.

Of course I think we need to give our bodies the tools to support the immune system as well, good nutrition, etc. But once you get to a certain point, more serious intervention apparently is called for.

The good news about Benicar is that I can find very little down side to it. If the protocol relieves our symptoms, and reduces the bacterial load, we'll have more energy to undertake the nutritional protocols that can support us. I don't know too many people who can manage to be very disciplined with their diet and nutritional needs when they've got the flu. Tha'ts basically how many of us feel as we try to function in daily life, dealing with this illness as well.

penny

Isn't it nice when the pieces begin to fall into place?

Scott

So, I had the blood tests and got the prescript for Benicar. Unfortunately, my insurance won't pay for that kind of dosage, so preauthorization is necessary. I decided to buy the prescript myself (just had half filled) so I've got 2 weeks worth giving me some time to figure something out with my doc to get this approved.

Here's a question for you, as I doubt they'll be answering this late on the sarc board. I'm scheduled for my 100 mg minocin tonight, but I'm wondering if I should cut back on that since I've also started the Benicar, and it will probably increase the effect of the minocin. I'm already borderline herxing with the minocin as it is (just itching, that's why I've decided to switch to taking it at night). I'm wondering if I should take the whole amount. I can't afford to feel bad tomorrow as I've got things I HAVE to do. If you were in my shoes, based on your experience with Benicar, what would you do?

thanks,

Becareful with taking both Benicar and mino together...you could experience a whicked herx.

It's better to stop abx for a while and let the Benicar extinguish the inflammation and get the immune system back on track...then gradually start the mino as per Trevor's protocol.

I was able to handle both because I knew that I had a light pathogen load and didn't have severe herx reaction anymore.

If you are in a similar situation as I was, then you may be able to start both...but as you said, you don't want to feel bad...I'd avoid the mino for at least a few days until the Benicar has had a chance to work on the immune system.

So, to reiterate...I wouldn't do the mino on top of the Benicar...I'd wait.

Scott

ps...I'm off to bed for the night...day 7 and all is well. I wish everyone a good nights rest.

Here's to hoping this protocol makes things a little easier on the road to getting well.

I've been able to lower my Benicar dose to 20 mg tid for maintenance...keep in mind that I'm in good shape and I'm lightly infected...so my response is likely better than average.

Several of us are working in the background contacting prominent LLMDs...trying to get the good news out about Dr. Marshall's work.

Please help us spread the word...sometimes our good LLMDs need a little kick in the pants to get them off of the fence and there's no one that can do this better than their patients...go get 'em!

Enthusiastically,

Well, I've already had some positive results with the Benicar believe it or not. I've taken two doses and had the best night's sleep in ages. Feels like I took a big ol' sleeping/pain pill, something like Ultracet, without any of the groggy side effects. Pain was definitely reduced, muscles relaxed, and I slept like a log, which is not like me at all. Boy, I hope this progress continues. Also, I have very low blood pressure, and the Benicar didn't affect it at all.

Thanks again, Scott, for bringing this to our attention. Even if it's nothing more than improved sleep and less pain without negative side effects, I'd be happy. But the hope that it will help us get well is so encouraging. Haven't felt this optomistic in quite a while. Am looking forward to the next dose, and whenever that happens, I know something's working. :-) (good thing it's not addictive. :-)

That's great news. I appreciate your report here. Benicar can react quickly...it did with me too. I notice improvement after the first dose.

Sleep has been so much better on Benicar...it's not hard to see why either...inflammation in the brain (encephalomyelitis) causes our neurotransmitters to dysfunction and we have cognitive problems, sleep problems and mental illness.

Have you seen Dr. Gard's paper entitled: The Role of Angiotensin II in Cognition and Behavior?

I can email it to you if you haven't. Send me an email and I'll reply with it.

Penny, the good news is that it does continue and even gets better with time...this is day 8 for me and I am still elated at the results.

Thank you for sharing your BP results with us, I know that is a concern with many...I've tried to explain to them that this is not a significant risk, but it takes time for folks to assimilate all of this. Their not sure how much trust to put into to all of this yet.

Hope is addictive...in this case that's a good thing,

That's well said...good supporting evidence.

Before I contracted Lyme disease, my passion was health & nutrition. I've been an advocate for the low-carb diet lifestyle for years...through my research in this area I've also discovered how important the polyunsaturated fatty acid metabolism (PUFA) is in regulating inflammation and how it is related to our fat metabolism and the insulin resistance connection. I call this the insulin resistance and inflammatory syndrome.

Briefly, insulin resistance and a sluggish fat metabolism promotes inflammation. This is also a two way street in that, inflammation also promotes a poor fat metabolism and gluconeogenesis (i.e., a catabolic pathway).

So, for those of us with this chronic debilitating inflammatory disease, we tend to gain weight as fat and lose lean tissue weight. That is, inflammation is catabolic, not anabolic.

Since contracting Lyme disease a few years ago, I've noticed that my lean tissue is not as developed as it used to be and even though I do everything right, I tend to have a catabolic metabolism. I know this is a common problem for all of us.

I knew this was related to inflammation and everything I knew to do to stop it was helping but it wasn't completely reversing it and I still had a catabolic metabolism.

I'm happy to report that I can tell that my metabolism is beginning to finally change...from a catabolic metabolism back to a anabolic one.

I'm losing those few pounds of fat around my waste that I didn't have until Lyme disease, and I'm getting better muscle tone and strength...and this is only in 8 days of Benicar. I find that amazing.

Angiotensin II receptor blockade is definitely an important part to a successful chronic Lyme disease therapy.

Scott

I think you've got it nailed right there in your email, and somehow Benicar is changing that whole dynamic. Whether it's increased blood flow, or more likely some combination of things, it's giving our bodies a chance to fight back.

People have used herbals and tonics throughout history. Just because we've refined our methods, doesn't mean that every pharmaceutical is evil.

People really should be reading Dr. Marshall's research before jumping to all of these erroneous conclusions, i.e. that it's masking symptoms or it's simply a pain blocker. The way Marshall's using it, it's making the minocin and other antibiotics work much better. Actually, it's making the immune system work better, so that the abx can then work. It's nothing like a steroid, Marshall actually insists that no steroids be taken, as they do tremendous damage. He has instructions for Sarc patients to wean themselves off steroids before starting the Marshall Protocol (since steroids have traditionally been the treatment of choice). And if you look up Benicar, the ONLY side effect is possible dizziness.

Dr. Marshall has been sick with Sarc for 20+ years. He's been looking for a cure all that time, and he believes he's finally found it. For the first time in decades, he's functioning normally. He answers thousands of questions, provides detailed instructions down to the very labs where you can have blood drawn and how to have it drawn, will consult with your doctor, ALL for absolutely FREE. He's getting absolutely NOTHING from this, except obviously the satisfaction of helping others get well.

I think Marshall is making a huge contribution to understanding and treating chronic illnesses, and people should be looking at the info he's providing objectively to see how it may provide clues or answers. Some small appreciation for his efforts seems appropriate. Of course a critical eye is important, but to claim that the therapy is harmful, without really doing the research, could be a real disservice to our community.

I'm very suspicious of most protocols. I rarely jump into something without a lot of scrutiny. I have not been able to find a single reason to be afraid of this protocol. A lot of the natural methods I've studied or tried have more documented risk. I hope people will at least keep an open mind, before deciding outright that it's dangerous.

I just learned that some very bright folks I know in England (who can speak for themselves) and who've been on this same path for the last couple of years, have coincidentally also recently discovered Marshall's work. They understand the mechanism behind the protocol very well and are starting it asap. So we'll probably be hearing from them soon as well.

My friend Tony in Australia's also going to be doing some experiments with Benicar in the lab dish.

THIS protocol, in my opinion, is worth a close look.

Even if it turned out to be nothing more than symptom relief, which I don't believe to be the case, the fact that there are no harmful side effects, makes even symptom relief alone okay with me. Symptom relief means I'll better be able to do all the other complementary protocols that I'd like to have the energy to do, but am currently too sick for. I'd take that.

Since getting lyme I would say sleep disturbance is one of my main symptoms. I used to fall asleep whenever I went to sleep, and wake up the next morning...in fact, I could tell my brain, "Wake me up at 6:00 a.m." and I'd wake up at 6 a.m. on the dot...and not because I usually got up at that hour.

Post lyme, the most I ever sleep on my own without waking up, is about 4-5 hours, and sometimes I wake up every few hours. IE fitful sleep. Not a solid 8 hours, and wake up refreshed. I bought some trytophan and tried it and it took away the wired feeling, made me feel relaxed, and fall asleep. However there is something going on with my bladder and its sensitivity, and it irritated my bladder (apparently amines, and trytophan is one, can do this). So I decided not to continue it.

It told me, though, that my serotonin was screwy. However, if benicar has helped both of you sleep right away, something else is goiing on in addition to serotonin.

Penny, who is Tony--and what does he do? Does he have CFIDS? What is he going to do with benicar in a lab/petri dish? Just curious, but you refer to him and say he is self educated and very smart and I'm just curious.

Yes, it's such a blessing to be able to sleep so sound again...it helps me to feel so better throughout the day too.

Day 9 for me and I continue to have dramatic improvement...slept extrememly well again last night. Praise the Lord!

I'm getting significant feedback from you and the word is that you are telling some prominent LLMDs about this work...good job! We are shaking up the Lyme community and they seem to be pretty receptive...I'll keep you posted on these exciting events.

Peace and comfort,

I'm a little confused about who you were addressing the "telling prominent LLMD's". I know that's not me because I don't traffic with LLMD's.

However, I will suggest something to you. That is that you and Trevor write a piece together for immunesupport.com. That's the place Byron and I wrote our "Healing Chronic Illness at Home" piece. They are a very interesting site that is part sales of supplement, and part extremely high quality abstracts, studies, and above all, articles by doctors dealing with chronic illnesses like CFIDS, fibro, lyme etc.

If you email me privately I'll put you in touch with the editor. You could write it yourself but they like an MD attached to the byline, mostly, so if you wrote it with him I suspect they'd be interested. Even though it's a drug approach, adn they tend to advocate supplements as well--but maybe you could take an overview. Their email newsalerts (which link to the articles, which they publish on the web) go out to about 38,000 people. They also have a quarterly print newsletter, which our article appeared in, but most stuff doesn't get into the newsletter.

THey get a million viewers a year or something like that. the thing I like abou tthem is that their editorial side maintains high quality and good integrity, while their supplement side provides the funds.

Also, the article gets archived on the web which is very useful. And I noticed with Byron's & my article that people in newsgroups picked it up and posted it. So you get the feeling you've helped others.

If you do so, try not to say it's a cure!!! There is an inherent responsibility in writing about these things, which is not to toot the horn too loudly, better to say, this helped me, it helped others, it may be something you want to investigate. People with little medical knowledge can get very easily swayed by reading something, and don't make good decisions for themselves. So it's an ethical responsibility to temper your excitement with caution and reserve.

Just a thought. As I said, I can put you in touch with the editor with a recommendation if you want.

Yes, I just had another really good night's sleep. It's crazy. I haven't slept like that in years! It's a relief. Feels like my body's able to relax for the first time in ages.

You asked: "who is Tony--and what does he do? Does he have CFIDS? What is he going to do with benicar in a lab/petri dish? Just curious, but you refer to him and say he is self educated and very smart and I'm just curious."

I met Tony a few years back on the CFS forums. He was trying to tell people that they were suffering from infections, not some unknown, undiagnosable illness. He was referencing the excellent New Castle work on Staph that came out of Australia about 10 years ago and almost no one has picked up on. Except maybe Walt Tarello, the veterinarian from Italy who cured himself and his wife with medical arsenic, which tony also tried with some success before his organisms became resistant. If you have any experience with CFS forums, you'll probably know his ideas didn't go over well at all. Most people, except for a few of us, didn't get him at all. Most people had no idea how big his heart is. It was all reaction, reaction, reaction, and he got kicked off numerous forums.

When he first started fighting back against what his doctors were telling him was FMS, he'd been in the emergency room 75 times. The pain and neurological symptoms were horrible. He was basically in a wheel chair at that point. He got fed up with his docs, and taught himself how to culture his own organisms and started treating himself with antibiotics. He has a way with docs, and his doc, seeing his progress, gives him anything he wants. His constant observance of the behavior of his organisms led him to constantly changing the antibiotics, and as a result, he's healthier now than he was in his soccer playing days. He's self taught but very bright, and has an amazing intuitive way of understanding this illness. He's helped my doctors, my friend's doctors and our michrobiologists. They respect him, even though the people on the forums couldn't see what he had to offer. But he can tell you what you've got just by hearing your symptoms.

Anyway, Dr. Marshall has said that he's beginning to realize that Benicar has actual antimicrobial properties, and this is what Tony wants to test in the lab dish. See if there is any direct response to it as an antimicrobial. Tony has found a lot of surprises in the petri dish. For example, Nystatin has antibacterial as well as antifungal properties. But bugs will become resistant to it. That staph converts to what looks exactly like yeast in the petri dish, but under the microscope, yeast is a much larger organism. He's found that some silver works great (but not all silver) and that it doesn't stay in the body long. He's also discovered that silver pushed with hydrogen peroxide is much more effective. And recently, that nebulizing hydrogen peroxide has given him his antibiotic sensitivities back. He's the one who got us "nebulizing" antibiotics with asthma machines before we even knew about the new nebulizers. He says that bugs can't stand salt (as long as it's LOTS of salt) and that we should take as much salt as we possibly can. He's the one who discovered the biofilm (he called it slime) aspect of these organisms before we had any research to support it. He says we don't have Lyme disease, we have Slime disease. Time after time, Tony has told me something that sounded far fetched, just to be proved true a little down the road. I trust him, and he likes the reasoning behind Benicar and is excited about it too.

So that's my little tribute to Tony. Those of us who've been helped by him, have a huge warm spot of gratitude for him.

Funny he calls it slime as I call it SLYME! As in, SLYMED!

I'd like to connect with him. Have to respect someone who has that much initiative. I think the silver does stay in the body--but anyway...

The antimicrobial aspects of benicar--well, as soon as Scott mentioned peptides my ears have perked up and I am just waiting to hear more. I haven't gotten to the point where I could call/contact him myself to ask questions. I am reading the Paul Gard article now--Scott, btw, if you are reading this post, is that in press, or already published? (no indication on the printout). And if so, when?

We do not actually have an immune system. We have a neuroendocrine immune system, i.e. all of it is interlocked and signalling constantly often using the same chemicals. I know that work has been done with deprenyl, and its neuroprotective effects. I'd like to know what the antiaging conference was and which researchers were investigating neuroprotective effects of benicar. Again, this is just curiosity.

Gee, sleep felt so good, I want to go back to bed!

penny

Forgive me if this was mentioned earlier but I can't make it through all the previous posts here. The reference you made above to a paper with Cognitive or Cognition in its title -- are you saying Benicar is also helping with brain fog?!

Brain fog, fragmented sleep, muscle pains and spasms, and weight gain are my most distressing lyme sx, and it sounds like Benicar addesses all of them?!

Where do I sign up?

Thanks,

penny

If you understand that the inflammatory cascade triggered by our infection is at the heart of this diease...when you correct the inflammatory cascade...as Benicar does...you correct the underlying problem and all symptoms begin to resolve....I call that a cure!

So, yes, those symtoms you mention, including cognitive problems are resolved with Benicar therapy.

I'm very sharp mentally again...almost 100% back.

Besides on Marshall's protocol you are taking low-dose abx which is dramatically more effective at killing borrelia than one taking high doses of abx with out exstinguishing the inflammatory cascade.

Don't you think the immune system is the best defense we have??? If not, you don't understand this disease very well.

Get busy and study Marshall's work...obviously you haven't.

Scott

Jen13, Oh yes...I see you softening up...this is making too much sense for you to ignore it any longer...You'll soon be one of the best advocates for Marshall's protocol...I see it coming ;-)

Welcome,

Scott

I was going to e-mail you privately, but this discussion is decidedly OUT in the OPEN, so I will ask here.

The condensed version is elementary, the pathogen (Borrelia) causes inflammation (cytokine cascade) through its products (endo- and exo lipoproteins) that do TWO things.

1. This inflammation is the symptomology of Lyme Disease.

2. Dramatically disables your immune system (macrophages) AND synthetic antibiotics from attacking the pathogen thus allowing it to persist. (See step 1).

Without "breaking" the cytokenic cascade and eliminating the persistant inflammation, any attempt at anti-microbial
activity is dramatically muted. Another way of looking at it would be to understand that in a NON-inflammatory envinronment, your antibiotic (or samento) is 100x or 1000x more effective.

So with that understanding, the goal of any curative therapy is to restore normal health WITHOUT continuous therapy. Has Trevor Marshall successfully treated patients to health while free of therapy?

The concern that is being voiced here is that temporarily reducing bacterial-induced inflammation should bring about immediate and dramatic relief, in fact, this IS the definition of meningitis. But, without removing the root causitive cascade-intiating agent, the inflammatory cycle will return and persist.

Please elucidate the curative properties of this therapy in relation to Borrelia. Another words, how does the body become FREE of borrelia using Benicar (or another ARB inhibitor)?

BTW, I believe, as do you, this is close to the final step in treating persistent bacterial infections of many types. I envision it as a "one-two punch."

1. Reduce bacterial induced inflammation via ARB-inhibitor.

2. Administer antimicrobial agent, natural or synthetic.

3. Infection eliminated.

I have been thinking about this in the Augmentin model. Amoxycillin is WAY more effective when combined with clavulanate Potassium. My GP explained it as "unknown" method of action. I see Benicar essentially as super augmentin when in combination with antibiotics.

The only way to study this effect is in tissue. NO DISH STUDY would be effective.

This is PROBABLY, JUST MAYBE why all the agents that WORK in the dish (lab), don't work in vivo. In the DISH, colloidal silver, penicillin, etc. work PERFECTLY against borellia, BUT, hardly at all in the body. There is NO inflammation in the dish, there is in the body!

A study SHOULD be done testing the effectiveness of current antibiotics in the presence of inflammation in tissue, then without, and chart the results.

O.K., I am certainly rambling here, but I just found the answer from Dr. Marshall on his site. Here goes;

Benicar BLOCKS protein synthesis of bacteria. By making certain proteins, that cause inflammation, the bacteria protects itself from your immune system. If you stop it from making those proteins, "the microbe can no longer manufacture the proteins it needs to protect itself from the immune system, and can be destroyed by the immune system."

It is time to roll on this. I appreciate the work you have done.

Keep on, keepin' on.

-Lyme Wolf

Also, we don't know what to do about the many infected with babesia, bartonella etc...and mino. I hope if Trevor is a self-taught genius, that he will be willing to suspend his biases and "discover" things along with the lyme community, developing over time a protocol for them that works. It will not be the same as sarc in many cases, I suspect.

And we will probably see side effects from benicar in some...it's just the nature of the bellcurve beast. For some, tolerable, for others not, who knows.

(repeated testing..pcr, ect..)?

Curious also about the question as to lenghth of time on Benicar..is it something used indefinately..just in conjunction with abx, or is it something used only when inflammation is significant, and then reduced as infection load goes down..

Also..low dose abx is in some cases of very severe Lyme infection with extreme symptoms is not going to be sufficient..but I am gathering that Benicar could be used with higher doses, if need be.

Mo

quote:

---

Originally posted by jen13:
LOL, Tree patrol, you were not being insulted. .

---

Lets see he's been treated 8 days on it and its the fix of the century.
Yeah I think he was (insulting) Ive read everything he's quoted sofar and I understand and Iam not on the bandwagon sorry.

Many of you are having a difficult understanding this...yes the pathogen triggers inflammation, i.e., an immune response that is supposed to defend us against the pathogen. However, it is this inflammatory response that is going out of control and actually causing our disease...damage to our bodies.

Since the pathogen is elusive and evades the immune response...the infection goes chronic and the self-perpetual inflammatory cascade, described by Marshall, kicks in.

This inflammatory cascade causes the immune system to become paralyzed and it can't attack the pathogen as efficiently as it normally would. But it sure can and does cause diseaes and symptoms...that's what borreliosis is.

When we fix the inflammatory cascade with Benicar...the immune system begins to function normally again (maybe better than normal)...it's ability to kill the pathogen is better. I.e, Benicar extinguishes the inflammtory cascade without causing immunosuppression as corticosteroids do and it enhances or modulates it's response to kill the pathogens.

There's just no down side to Benicar therapy...save one....it can't be used by pregnant or potentially pregnant women.

Scott

Do you use a LLMD? If so, and someday he/she recommends that you try Benicar...what will you say?

Many folks experience dramatic improvement as the inflammatory process is broken..but about 5% can have a dramatic herx as the bacteria are killed.

The requirement for a low antibiotic dose is because the bacteria is being made vulnerable by the action of the Benicar..and a low dose 100mgs a day of Mino is about all someone can handle in many cases to prevent a huge herx.