I've been out of town for the last few days, and I could hardly wait to get back home again and see how this topic on Trevor Marshall's therapy was progressing. I'm always on the look-out for new approaches to dealing with chronic, persistent LD (&/or CFIDS) whenever all other known therapy protocols have been pursued, but without the desired outcome.

While I tend to be ultra-conservative whenever it comes to jumping into something new and unproven, especially when I have trouble comprehending it, it does give me a great deal of satisfaction and comfort just to know that there might still be another treatment option on the horizon, if we reach a major impasse or come to a standstill.

To my mind, Marshall's therapy is the first new idea that's come along in several years. That's why I'm so excited to see that several persons here are interested in it enough to investigate it further.

I do appreciate it that you have started new topic headings for different sub-themes pertaining to it, because that makes it much easier for someone like myself to try to sort through all of the material. However, I sense that the appearance of several different new topics might seem overwhelming to some folks, so I wanted to state that from my point of view, I find it very helpful that the extra sub-topics have been created separately. It helps me try to grasp this new material to have parts of it presented in separate chunks.

It's the as-yet unfounded statements that this is the key, the cure, etc. Lisa makes some knowledgeable points about benicar, and notes that her own kids are almost at 100% under the care of a good doc, and you post, what if they could've been cured in a few weeks--

????

Is this a logical statement? They had chronic lyme and you are implying that with benicar & abx they could be cured in a few weeks?

Richie Shoemaker went overboard in a somewhat similar fashion, though not on message boards, when he claimed questran plus antibiotics (often doxycycline) was the key, the cure, because it absorbed supposedly perpetually circulating neurotoxins that were too small for the body to take care of itself...

But questran turned out to be one more tool, one that was adjunctively useful in some cases, not all. It also had downsides...absorbing people's nutrients over the long term.

It could be this is far more useful, or far less useful. Who knows yet? Byron advocates testing for the Vitamin D ratio, and that's very reasonable. In addition, someone on CFS-FM posted a good point that most lyme patients do not have trouble with the sun. I for one feel much better in the sun. So there is no solid evidence of any kind yet as to what low dose mino plus benicar might do for a chronic TBD (tickborne disease) patient.

quote:

---

Originally posted by free2reckon:
In my sincere opinion, I believe we have found the key to this disease and the cure for it. Time will tell for sure.

---

In my sincere opinion, I believe that over time, this drug will NOT be found as the key to this disease,

because it has already been proven that drugs never cure disease, they only cover up the symptoms.

You say that you are feeling better after four days. I think that is wonderful but four days do not a cure make, not in this business. There needs to be a body of solid clinical evidence to support the assertion that this protocol is a cure. You need to have so many cases where people have actually been cured.

I need not remind you that good science is slow science. What you have brought to public attention is something that should be carefully considered and possibly used as a therapy. On the basis of clinical experience then one can make sober and non-passionate assessments of its efficacy.

I need not remind anybody that Lyme disease is an insidious, devious, intractable and fiendishly complex illness. It may well be that benicar or some such really does hold the key to its vulnerability. However I wonder whether low level dosages of any antibiotic are of sufficient strength to break through the blood brain barrier in sufficient force to eradicate the cells infecting the brain and spinal column. You may stop all the cascades you wish but until you eliminate the bugs themselves you still have disease.

Further, the question of how long this protocol takes to be effective either to control of eleminate the disease can only be arrived at through significant amounts of the use of it and a body of clinical experience.

Please take it all with a grain of salt here. Everyone's entitled to an opinion.

I for one greatly appreciate your bringing this subject to light, and am anxious to see your progress. It may be a little to early to actually judge anything, but I'm really glad someone's getting some relief.

Hang in there and keep us posted!

This protocol is curing people of RA, but it's a slow, long term affair. The point is, there's scientific reasoning behind this new paradigm of low dosage abx, if you're willing to look at it.

A lot of these so called autoimmune illnesses seem to respond to abx favorably at first, just to see patients relapse later. We can't seem to find a way to get the abx to do the complete job, so maybe we need to look at a new way of delivering the abx. Pulsing it, and minimizing the herx, rather than bombarding the body with it, according to The Road Back Foundation, seems to be effective in RA and scleroderma and potentially in other chronic and autoimmune illnesses. Now we have an agent in Benicar, added to low dosage abx, that minimizes the inflamation and the herx, allowing the abx to work unencumbered, successfully treating Sarcoidosis, and potentially lupus and lyme as well.

Whenever I see anyone treating an infectious illness with any kind of success, I get really interested, since treating myself for bacterial infection is the only approach that has ever given me any substantial relief.

The fact that someone's enthusiastic shouldn't cause anyone to be upset. If it gets the word out, that's great. If it makes the right people think a bit, even better. The more people like me who are willing to experiment with it, the better for those who want to be more cautious and observe. This is just one of those things that hits me as the right thing at the right time FOR ME based on my experience. I don't feel that way about a lot of things but watch with interest as other treatment topics are discussed and touted. So I see nothing wrong with Scott stating what he believes so enthusiastically. I mean, you can tell from his tone that he's got a lot of confidence in this approach, and it's exciting to me to see someone so excited about something that's actually available to us, and has some research behind it.

Yes, it's possible that this will be another false alarm, but on the other hand, it may up the bar and increase awareness of how this disease works. It's all good, as far as I'm concerned. And personally, if I can reduce the levels of abx I've been taking, I think my liver's going to love me, too.

I continue to do well on cozaar. Not perfect, but very well. I do better on two doses a day (as opposed to one dose). But when I see posts like the one about lyme patients who have taken Benicar for years without symptom relief I have to question what is going on. (How long has Benicar been on the market?)

For those of you who don't want to take benicar because your bp is too low to start with - cozaar lowers bp less then benicar. It may be an alternative for you.

I hope Scott continues in his enthusiasm. It is a good trait.

Do me a favor......never stop your unbridled research and enthusiasm for helping those who have suffered with this illness.

As a 'former' sufferer who openly admits he was lucky and caught it early...you still have the mental and physical capbilities to carry on VERY important work in both chemical research and public knowledge arenas.

You need a slap on the back, and a good bag of oats for energy....you STALLION.

Trout

PS.....I approach each new protocol with skepticism...and the ones I believe the most...with even more skepticism, and at this point I have no opinion than the above...you stud.

Remember, I had no real opinion on heavy metals ALONG time ago...and, now I believe it is the lynch pin in this disease dynamic.

Apparently, people who take Benicar for hypertension take much lower doses than Marshall is using in his protocol. Marshall is saying it needs to be used every 6 to 8 hours at minimum. Plus, the Benicar has to be used in conjuction with the proper antibiotic. This could account for the lack of symptom relief mentioned in a previous post.

I will keep reading and hope my little lyme-riddled brain will take it in - and I hope that Benicar does turn out to be significant. I can only wait and see right now.

I also hope that my LLMD has or will look at this information in depth and consider using it.

I agree.
It's helping a lot of Sarc patients.
It's quite possible it'll help Lyme (and RA and Lupus) patients also.

I don't think it'll be a flash in the pan.
There needs to be some Lyme patients try it, and I think there will be - I think there's some innovative Lyme Drs that'll run a field trial with their patients.

I need to sign off this thread - I'm putting up fence, horse shopping, feeling great, and will check back here from time to time - but I have a ton to do.

Mr. and Mrs. Nick Tick

SERIOUSLY...be careful...I have been bitten twice, and the second time nearly killed me in more ways than one could imagine!!!

Do you know the electromagnetic charge of Benicar? Just curious...for a good reason.

This is not a run-of-the mill pathogen! It's one very, very, very tough and sneaky bug.

Be careful. The body's response to this pathogen is to raise TNF alpha...think long and hard about why.

Look at the abstract from Romania and figure out WHY combining abx. along with restoring the normal level of Mg worked to cure.

Bb, a metalloprotease, uses Mg for its enzyme reactions. We need Mg (and Ca) to form healthy antibodies.

Bb is PFK dependent. It follows the glycolysis pathway...not good. Far, far less ATP...Cancer and malaria follow this pathway also.

Now how do we shut down this pathway and restore oxidative phosphorylation to heal?

I talked with my pharacist and with a friend of mine who is a nurse about this. The nurse said that it reminded her of heparin therapy. My pharmacist said that since I was on blood pressure medicine anyway why not try it. He was however very surprised at the dosage of 40 mg every six hours (?). He felt it would cause a serious drop of blood pressure and attendant problems.

So the question is is benicar, which has an anti-inflammatory capacity along the lines, I am told, of bextra the only such drug that could bring about this blockage of the inflammatory cascade that you say is the major source of so many of our problems. Could there be others out there as well which can be used without having the issue of blood pressure even brought into the picture?

I think, that you might be onto something. This is why I think so. When I took abx at regular (or higher) dosage I always felt terrible for the whole time. Almost constant herx. Then when I stopped I felt better for a few weeks. On 1500 mg of tetracycline I was herxing almost constantly for two months. It got so bad I had to discontinue. Tetracycline kill off is dosage related and less than 1500 mg of abx is still killing lyme but at a slower rate. Whenever I lowered the dosage I felt much better and according to Donta the kill off was still happening.

What you are saying also aligns with the research of Donta who says lyme can be dormant for a long time and can be triggered by a regular course of abx. Your reasoning explains why. I think, that is what happened to me. Abx started the cycle. I never felt right for the past 10 years, but I guess I was 90% ok until abx was prescribed for minor thing. Then I went to hell very fast and that was in winter in Maine. No bugs January. It could not have been a recent infection. And again I had the same symptoms for 10 years, but after the abx it got much worse. I read a lot about people who get worse after being treated for lyme with large dosage of abx. Somehow abx alone can not finish the bug. It needs the immune system to take over. Your reasoning seems to be correct. When abx are discontinued there must be something taking over but if immune is deregulated nothing is going to happen.

I also have to add that Marnie is quite right about Mg and Calcium. Only after taking Omniceff and Biaxin for 4 months my blood calcium levels and magnesium levels came back to normal. These bugs must be using Ca and Mg.

Questions:
1) If what you are saying is correct then what about people SED rate very low like 1. This practically says there is no inflammation. I know a lot of people who have lyme and no inflammation showing on tests. Even with repeated tests. What is going on here?

2) What is your SED rate?

Keep up the work you are doing. I am sometimes disappointed that LLMD do not search for more. Did you talk to Dr. B from NY. If you can get his attention than that would open the door for a lot audience.

You have my full support. I will do my share and contact my LLMD.

Way to go! Absolutely amazing. I am starting this therapy and will not hesitate. I look at it this way, what have I got to lose? My health? Um.. no.

How can I be a skeptic when I don't have my health? I can't. And all this clicked and made some serious sense to me.

I do however, have a question. I know you are busy so that is ok if you can't get to it.

I truly believe this will work for lyme. The bottom theory is this: Stop the inflammation cascade ( which is WHAT causes the symptoms of lyme) and you stop the symptoms OF lyme

while forcing the bacteria to stay put in the bloodstream, where it will be HIGHLY suspectible to the LOW dose abx that you will now need to KILL the infection.

I think I have that right.

The question being: What about babesia, bartonella, etc. Do they work the same as lyme, I mean what I am getting at is this.

If a patient with lyme, bartonella and babesia takes Benicar, what will be the justice to me if Babesia and Bartonella are not "inflammation cascade bacteria?" Are they inflammatory diseases also- the coinfections???

I mean.. I think you know what I mean.. I hope.

If not, is it then safe to say that the patients benicar does NOT work for are coinfected?

quote:

---

Originally posted by TheCrimeOfLyme:
What about babesia, bartonella, etc.

---

Crime,
I had the same musings as you. Regarding Bartonella, however, I've been spending a lot of time doing research on Bartonella -- over 300 abstracts plus a few articles on it. What I've learned is this: The only folks who have trouble with Bartonella usually are those who are immune-suppressed, such as the very young or the elderly or AIDS patients. So, in my mind, Bartonella is secondary and opportunistic in LD patients.

That means that if we control Bb more adequately and put it into remission, then the host's own immune system ought to be able to bring Bartonella under control without the need to resort to heavy-duty antibiotics. Maybe. Cross your fingers and don't exhale.

That still leaves Babesia. I'm hesitant to say what I think about Babesia. I suspect that it will still have to be dealt with separately....but maybe not, who knows?

The Ehrlichias shouldn't be a problem because they would respond to minocycline just as well as they do to doxycycline.

Likewise, the mycoplasmas would respond to the protein synthesis inhibiting antibiotics, so no problem there.

I'm wavering between cautious optimism and excited enthusiasm. Trial and time should tell the tale.

Thanks to all those who have participated in these provocative discussions, including those who have played Devil's Advocate.

Thanks to both Barb Peck, who was the first to post the sarcinfo website, and to Doc Scott (Free2Reckon) for their patience in tutoring us through this mind-boggling material. A special thanks to Doc Scott for alerting our ILADS doctors about this.

I'm confident that our LLMD will be enthusiastic about this because he's been saying all along that it's the cytokines which are causing the major problem, which is just another way of saying that it's the inflammatory response which is the culprit. I can't wait to see what he says about this the next time we see him. I'm expecting that he will be up-to-speed on it by then and eager to try it.

PS - I almost forgot to mention that this concept fits well with Dr. Thomas McPherson Brown's ideas. Dr. Brown emphasized the necessity of controlling the inflammatory response so that the antibiotics could penetrate the tissues better. For that purpose, he used ultra low dose cortizone to initiate therapy in RA patients. I have a hunch that if he were still alive to day that he, too, would embrace this new therapy protocol.

quote:

---

Originally posted by minoucat:
Thanks Scott, TXLM, Jen13, OK now my brain is too fried for whoall else and this isn't an Oscar acceptance speech anyway, but thanks everyone for their investigations, rebuttals, and explanations.

---

Minoucat,
Thank Barb Peck, NOT Me. She's the one who first brought this to our attention. I'm just a tag-a-long and I'm still pretty clueless.

I'm just going on intuition and not much else about this because I haven't had time enough yet to study it thoroughly enough. My background is too weak for me to grasp all this completely new material so quickly.

I'll be waiting to see if our LLMD is enthusiastic, but I'm guessing that he will be, based on things he's said in the past about the effect of the cytokines on the whole disease process.

I notice that you wrote your response in the early hours of the a.m., Minoucat, so I won't chastise you too much. But it is important to give credit where credit is due.

Credit is definitely due to Barb Peck!...but NOT to little ole moi, this time. She has been one of my leading lights throughout this whole Lyme venture.

As I stated elsewhere, I look up to Barb because she has successfully come out on top of a very, very difficult and challenging case of late-Lyme plus lupus, and in spite of being spleenless and having Babesia to boot. So when Barb makes favorable comments about anything, I always sit up and take notice because I know how thoroughly she had to do her own homework in order to find her own answers. Keep in mind that her case was so extraordinarily complex that even the best LLMDs had declined to work with her.

Therefore, I give much credit to Doc Scott (Free2Reckon) for helping explain this to us in simpler terms and also for making the effort to call it to the attention of the ILADS doctors for us, but I give equal credit to Barb for being the first to post the link to it and call it to everyone's attention.

Now, my only worry is that the dosing schedule for Benicar -- every six hours, in order to keep the blood levels even -- is going to be the biggest downfall for most folks. I can't imagine a bunch of late-stage Lymies being able to wake up enough to keep their doses on the right schedule and not mess up the whole deal.

If the therapy fails, then I predict that it will be because folks fail to hear their timers and alarm clocks go off to remind them of their 4th dose during every 24-hour period, because Lymies are notorious for both insomnia during the night and for hypersomnia during the early part of the day. So, who's going to supervise their dosing schedule for them if they are in too much of a stupor to manage it themselves, huh?

This is another piece of the puzzle that makes so much sense to me. I don't know how many of you experience migraines, but I have them regularly, and it's only been in the last 6 months that, based on everything I've learned and experienced, that I've come to the conclusion that my migraines are caused by an inflammatory response caused by a hormonal change, especially during my menstrual cycle. Now, here's Dr. Marshall talking about Vitamin D, a hormone precursor, and pointing to a study that's saying migraine can be treated successfully with an Angiotensin II Receptor Blocker, like Benicar.

I am really looking forward to trying this treatment. Am calling my doctor tomorrow.

quote:

---

Originally posted by free2reckon:
Regarding the night time doses of Benicar...I don't wake up at night and take a dose...I dose in the am when I awake and in the pm when before I go to bed. I wouldn't set an alarm to wake me....if you are sleeping sound...I wouldn't disrupt that.

---

Scott,
Most Lyme (& CFIDS) patients I know sleep as much as 11-13 hours, with 9-10 hours as a bare minimum. I doubt that it would be possible to keep blood levels of Benicar steady enough until/unless their sleep patterns improve remarkably.

Remember, you are a relatively healthy Lyme patient yourself. So, this sleep issue probably isn't going to be as much of a problem for you. However, take it from me here please, that if you don't want this therapy to fizzle out before it gets off the ground, then emphasize the importance of the proper dosing schedule for Benicar.

I want this to succeed as much as you do, so if there's just one small thing that I can contribute to this protocol, it is NOT to ignore the hypersomulence problem of late-stage Lyme. To do so would be folly indeed, if it causes the dosage schedule for Benicar to become too messed up.

I trust that the opinion leaders among the LLMDs are a very bright bunch of fellows indeed. I will be more than a little bit surprised if several of them aren't interested enough in this idea to try it. The rest of the LLMDs will be like sheep who follow the other LLMDs whom they regard as leaders, so it might take a bit more time for them to follow along.

quote:

---

Originally posted by TX Lyme Mom:
Most Lyme (& CFIDS) patients I know sleep as much as 11-13 hours, with 9-10 hours as a bare minimum. I doubt that it would be possible to keep blood levels of Benicar steady enough until/unless their sleep patterns improve remarkably.

---

TXLM,
I know this won't completely address your sleep concerns, but I've been writing trevor Marshall to get some more info. Phase I of the protocol requires benicar doses at every eight hours, rather than every six. That gives a little more leeway for sleeping.

What I was told was if herxing gets bad, you can take it as often as every four hours. With eight hour dosing, it seems most would be able to tolerate it, and if you're herxing bad, you may not be sleeping so well anyway.

I was on Benicar with antibiotics for three months last year. It was not to the full dose as recommended by Dr. Marshal but it was 40mg twice a day. I did not see any of the benefits that have been mentioned in several of these posts. That is not to say it is not effective treatment protocol. I am one those that is dealing with a severe consequences of the disease.

I understand that the government can move extremely slowly in approving drugs and treatment, but there has been a reason for this. That is to insure that these drugs don't have any long term consequences.

Five years ago, I was on three drugs along with a bunch of others that were all pulled off the market around the same time. In two of the cases I was using drugs that were being used for other purposes other than what they were intended for. I did suffer some side effects from the long term use of them.

Today I am again using a drug that has not been approved for use in men but approved by the FDA for use in women. That drug is Zelnorm. I had to think long and hard about using it because I did not want to go through a series of problems again.

My point here is that we all need to be careful. I would not rush into anything, until I was sure of the potential consequences. This is especially true when it involves my kids. While I want my son's to be better as soon as possible, I would not want them to be test cases with out proper monitoring.

Lyme and the co-infections are a complex system of diseases. Almost everyone is on some form of custom treatment plan. For the most part, everybody seems to react differently to treatment. Hopefully ILADS will be able to pull together information and organize some trials to produce more effective treatment plans.

There are a group of LLMD's that suffer from Lyme as well. I know for a fact that one of them spends a lot of time researching for new treatments for his patients as well as himself. Our LLMD's are under constant scrutiny already, so they might be a little hesitant to jump into something new without sufficient understanding of the side effects.

Until they have a complete understanding of this disease, I would be careful. It is interesting one of the treatment protocols for ITP/TTP is to remove the spleen for complex cases. This was one of the options they were looking at for me. Thank goodness I made the decision not to go that route; it would have been disastrous to me. I know a couple of people who did with serious consequences, but this is what happens when doctors do not have a complete understanding of the disease.

As I stated elsewhere, under one of the other topics about Steere and the politics of LD, the political climate started to change back in the early 1990s when the first articles started coming out about the cost-effectiveness of long-term antibiotic therapy. Shortly thereafter, the infamous Dearborn Diagnostic Criteria were published. The politics of LD "behind the scenes" pertains more to the pocketbook issues, than it does to aspects of the more openly discussed debates.

That's why I don't expect to see too much vehement oppposition to this idea from the Steere crowd -- providing of course that we approach it cautiously and get all of the proper diagnostic testing done and follow the established protocol closely enough to comply with whatever IND is set up to monitor it.

Yes, you're right to take a guarded stance on it. I'm still a fence-sitter myself -- an honest MugWump indeed, if you recall what that term meant in American politics back in the earlier part of the 20th Century.

You said: "I was on Benicar with antibiotics for three months last year."

Don't know if this will shed any light on your personal experience, but Marshall does state very emphatically that if you take less than 40 mg Benicar every 8 hours, the protocol will not work, and may actually make you sicker.

One reason I'm so enthusiastic about this protocol, is that a friend of mine, a sort of self taught microbiologist who has basically cured himself and has helped me more than anyone, looked over Marshall's research and thinks it's brilliant. He's very excited about it. If he weren't so excited, I'd be a lot more cautious, but I have so much confidence in him, that I'm really eager to give this thing a go. If it works for me, I've got a feeling it will work for a lot of people. Let's keep our fingers crossed!

penny

I very clearly understood that his protocol says that it is necessary to use Benicar 3 times a day. But everyone that has been touting this has said they felt relief in their first dose.

I understand the excitment that Scott has generated over this protocol on Lymenet. It is very interesting, but I have felt a little of a hard sell by him, and now you appear out of no where. The only topics you have responded to are the ones regarding this protocol.

I have watched you and Scott go back and forth over this issue and a red flag has gone up in my mind. I must admit it is bothering me a little. There are alot of desperate people on this site, whose lives have been destroyed. The last thing we really need is to send them off looking for the holy grail of treatments.

I hope you and Scott are sincere in your posts and are reflecting true experiences. I am not trying to be critical here, but I would hate to see anyone get hurt. I feel that this protocol has some real merrits and it has peaked my interest. I was hesitant to write this post, but I felt my feelings needed to be expresed.

On the sarcinfo site it is clear that not everybody feels better with their first dose of Benicar. It is a little more sobering to read how many, if not most of them go through much of what we do.

They have herxes, and their health goes up and down. The treatment is long term, not a quick fix. But it does sound like in general people are improving.

Whether or not this will work for many Lyme patients remains to be seen. The part that is attractive to me is the much reduced abx dosing. If I could get as well on much lower doses of abx, that would be an improvement.

I feel people need to go to the sarcinfo site and learn about the protocol. www.sarcinfo.com
It's not just about taking benicar, or just low dose abx.

You need to do the proper testing, avoid supplemental vitamin D and light exposure, especially to the eyes, moniter your blood pressure twice a day, follow the abx dosing schedule, and keep in touch with your doctor.

It may be a useful tool for Lyme treatment, but it's going to take time to see the real benefits, and the potential pitfalls. We ARE lucky that the sarcoidosis people have been pioneering it for a few years, and have learned a lot in that time.

I am like Jen, I tend to get very suspicious of people who make blanket statements like he does. I do wish Scott would moderate his enthusiasm to make room for less repetitive and more in-depth thinking re tthe Marshall Protocol.

In regards to your comment about Penny coming out of no- where, and Scott giving a hard sell about Marshalls protocol...What?

I'm am/was on this site to learn. But I researched other sites on other diseases also -

I've been active on this site since about Sept.2002.

In 2003 I discovered Trevors Sarcinfo site, and have been active over there ever since -

I have exchanged a ton of technical papers with Trevor et. al on disease, the immune system, antibiotic chemotherapy,
different abx chemical classes, combos' their interactions and their efficacy on slow growing bacteria species...

I mentioned Sarcinfo many many times on Lymenet - encouraging people to take a look, but it wasn't a "hard-sell" and I don't think too many people went over fron here and actually read Sarcinfo.

I think most people without a (bio)chemistry background, or a good understanding of the way the immune system works would not understand half of his theory.

And please lets remember - everything that's done as a therapy in Lyme (unless you follow the Steere protocol) is developed THEORY - there is not a set protocol for Lyme, nor is there an "antibiotic of choice" that works for every one.

There were alot of people skeptical of my abx protolcol (lower doses - pulsing - giving the herx priority, etc) and Trevors protocol fit better with what I was alreading doing.

Until Scott - as far as I know I am the first and only Lyme person discussing Lyme with Trevor... and I have an RA friend doing his protocol (but without Benicar cuz she can't get it).. and she's had substantial improvements.

OK- now I'm getting on my high horse:
The comment someone made about Lyme being somehow harder to treat, or worse than some of the other inflammatory diseases is just totally out of line in my opinion, and disrespectfull of other diseases.
You talk to someone who has had Sarc for 20 years, or Lupus for 15 or RA.. then get back to me on what's worse.

People with lyme, who have Lyme Drs. can (usually) get any abx they want. These other
people are struggling to even find ANY Dr. that does something more than shove predisone at them.

OK I guess I'm off my high horse.
The important thing is that the info is out there now. Everyone can choose to do with it what they want.
Just be glad you guys HAVE a choice.

Barb

I am not saying that ARBs do not have the properties you (and others) describe.

I had already spent quite a bit of time on the sarcinfo website, quite a while ago and then again when Barb mentioned it again last year, and I was following what was being said with great interest. I take bacteriostatic abx (as well as tinidazole pulses)in fact I have finally managed too convince my doctor to give me mino and I am not opposed to enthusiasm, but after years of battling THESE infections, I strongly suspect that things are just a bit more complex than the way you, Scott, report it to be, that's all.

I don't have the necessary scientic background to assess all this for myself, but I have been reading and studying all this
stuff for long enough to be cautious of panaceas.

Although I don't need any convincing that most so-called auto immune illnesses have an infectious component, I do feel that the particular infectious cocktail each of us suffers from does matter re tx, especially if you have a Babesia-type infection for eg, and I feel uncomfortable with the blanket statement "Benicar and mino will reset your immune system and you will miraculaously be rid of all your pathogens"!

In fact i mainly wanted to say that Penny is for real and not a plant, as hwlatin was suggesting.

Nelly

In know way was I trying to dish Scott or Penny. And as far as dishing the other autoimmunine disorders, I have never said that Lyme was more difficult. I was plugged into the platelet disorders organization prior to this because that was what I was dealing with at the time.

TTP 15 years ago would have been a death sentence, and all the others diseases each have their own set of troubling problems. It is obvious the medical community is struggling with autoimmune disorders. For all the expertise they have most of them are shooting in the dark.

I have spent 8 years researching on the internet prior to this. I have obtained all sorts of information about the different diseases. I actually ended up on Lymenet towards the end of my journey. I still view all those other sites and I interact on some of them.

I became concerned about these topics because of what Scott was suggesting for the children. Mind you I don't think a doctor would rush into giving a child Benicar with out knowing all the facts. But we all know people do obtain drugs in many different manners, and for that odd chance that someone was able to get Benicar and give it to a child thinking it was ok, must be informed properly.

I would never want to discourage discussion on any topic. That is why I was hesitant to post. I have no problem with Scott's enthusiasm. I think it is great. I would be the same way if I came across something that I thought might be a possible cure. But we all need to take responsibility for what we say and how we say it.

There are some very, very important benefits to TNF alpha.

Please refer to my documented post re: TNF alpha controversy.

In my opinion, it is not the inflammation that is causing the problem, it it an underlying underlying infection which is causing the inflammatory response...big time.

The Romanians cured (albeit only 2) patients by using abx. WHILE BRINGING Mg LEVELS BACK TO NORMAL. THERE WAS A HUGE % DROP IN THE LEVEL OF Mg. HUGE.

Valletta, (U.S.Patent in 2001 titled: "Magnesium for autoimmune") was able to cure RA, ulcerative colitis and invasive bowel cancer" using Mg pyrophosphate and sub (sublingual, under the tongue), B6.

In the early 1900s, Dr. Pierre Delbet and others cured many diseases using Mg chloride.

Why?

Mg and Ca are needed to form healthy antibodies. They are also needed by our NK cells (natural killer - cancer fighter). This I have documented in my "In a nutshell part 1" post.

Bb uses Mg in its enzyme reactions (microbiologist, Dr. Gary Kaiser). The die-off, toxins have a strong neg. charge (acidic). This compounds the problems. The body pH balance...additional mineral HAVE to be pulled out of storage to compensate.

I think the magnesium issue is pretty well known for people with chronic illness. I get magnesium i.v. drips, take loads of magnesium, try to increase my intake of greens, etc., but I can't replenish it to any kind of significant levels. That's because the underlying problem is not a lack of magnesium but the bug who uses it.

Interestingly, I just read somewhere recently that these bugs THRIVE on magnesium, so perhaps we're just feeding them, helping the bugs rather than ourselves.

penny

To get a handle on the absolute importance of Mg...how it is needed to make ATP - energy - via both routes, controls over 350 enzyme reactions, needed for our immune system, to make proteins, repair mitochondrial DNA, PLEASE go to the above to learn more about this mineral that Bb is using up of our supply.

We CANNOT starve ourselves of this mineral in order to fight this metalloprotease!

Penny, if the Romanians are right...the % drop of Mg HUGE! They brought the level up and MAINTAINED IT until the infection was eliminated.

sorry if my appearance surprised you.

It's just that I haven't frequented this board in the past. I've only recently started visiting Lyme boards, prior to that I've focused on the CFS boards. I've been trying to bring the infectious cause of CFS to the attention of the internet community for at least 2 years, and it's been very difficult. Met with much derision most of that time, and it's only been recently that people actually seem to be accepting the idea that chronic illnesses may have an infectious cause, whether lyme, mycoplasma, staph, dental/sinus infections, etc.

At least lyme patients know they're dealing with microbes, and have credibility with the medical community. The CFS community has never had that kind of broad based support from the medical field, even though what applies to Lyme seems to apply to CFS/FMS and a lot of so called "autoimmune disorders" as well. So now I read a lot on the lyme boards. Even though I initially tested negative for lyme, I think I may have actually been infected with it for many years. Had some classic lyme symtpoms about 18 years ago. However, I have tested positive for some very difficult organisms, coag. negative staph, for example, that I believe are just as difficult to eradicate as the lyme bacteria, even though I've been on i.v. antibiotics, and countless oral antibiotics, I can't eradicate these organisms.

One reason I'm so excited about Marshall's protocol, is because my Australian friend, who's helped me get a grip on my illness more than any doctor, looked at this research and was also very excited. He says it makes perfect sense. And as unconventional as my friend may seem to some, in his approach, he hasn't led me or my friends wrong yet. Has helped us immensely, as a matter of fact. This is definitely worth a try in my book, and definitely worth getting the word out to let people decide for themselves if they want to give it a try.

I helped spread the word about Shoemaker, too. Unfortunately, Shoemaker doesn't seem to have much of a real understanding about antibiotics or the kind of treatment these organisms require, but at least his research is a step toward credibility. That PWC are dealing with co-infections, at the very least, and that it's not all in our heads.

I'd rather talk about this in another thread, keep this thread focused on the Marshall protocol. I know you posted elsewhere. I'll look at your Romanian protocol over there.

Ilike this thread...immensely....