quote:

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Originally posted by free2reckon:
So Tree,

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

Scott

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Side effects are the concern here and there are side effects.
I know you are very very thrilled right now Iam happy for you. Just dont pass it off yet, as a cure all. Nobody understands this lyme in its entirety or the bodies responces its very complex.Good Luck.

This actually makes sense. Before my lyme was correctly diagnosed, an immunologist diagnosed me with an immune system abnormality where it was working overtime. Can't recall the exact name he gave it.

I will continue to supplement magnesium but I am very encouraged by the Benicar findings.

Scott,

I am going to scream if you keep on patronising everyone here, repeating the same fairly easy to understand concepts ad nauseum and replying to people who might have questions and objections that it is because they are stupid or ignorant or they just don't get it!!

Most people here have a very strong vested interest in finding a cure for what ails us, plenty of drive and although most of us are not scientists or doctors by trade we have become very educated patients. I am pretty sure most people here DO understand what you are saying, so you can quit reformulating the same thing over and over again.

On the other hand, I for one, am very keen to read new things and results.

Your over-the-top "enthusiasm" is getting in the way. I think you are verbally bullying people into buying THE MARSHALL PROTOCOL, turning some people right off in the process, which is a shame as it might indeed turn out to be very usefull not only for Sarc but but Lyme etc.

So, thanks Scott for bringing Dr Marshall's ideas to the forefront of the discussion on Lyme and CFS groups but please don't CALL ME STOOPID! (quote from the film : "a Fish Called Wanda")

I apologize for my tone...I'll try to keep my passion in check.

It's just that I have to continue to repeat myself and it get's frustrating...maybe I'm not being very clear.

I've been reading Marshall's papers and I'll be going over Marshall's body of work with our doc, but I'd still like to know any thoughts -- and hear any experiences -- about using Benicar in combination with the Mepron/zith protocol for Babs. But maybe on a different thread!

Face it, we need a new approach!. People are going to Italy, getting Malaria in S America and more. .This treatment approach by Dr Marshall appears sound. I spoke to him for 1 hour regarding his findings. Who wouldn't try it?

TM said: " it is used untill you are symptom free. It kills the lyme bacteria..or rather permits the bodys immune function to kill it. A small dose of antibiotic is often all that is needed because the bacteria is exposed to a healthy immune system."

<= 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.>

Dr Marshall said: The need for max level antibiotics is removed because the body's immune system can now find and destroy the bacteria.

Eventually, the need for Benicar is deminished as you are symptom free for longer periods of time..untill there is no requirement for Benicar to reduce Baterial load and inflammation.

Pee pee/Poo poo?????????????????????????????

I think it is time to end this thread,actually it was a long time ago, as most questions, if they can be answered at all, have been! Everyone is repeating themselves...everyone is repeating themselves...toy boat, toy boat....

Time to go sleepy sleep...

Now is the time to set up a post for people willing to try the protocol and to track their progress. Yes, Scott, calling someone ignorant was unacceptable, as was the post from France saying some are stupid...what the hell is the matter with you...we all are sick with Lyme...how dare you or anyone else be so arrogant?

What this shows are egos getting in the way.

As for Marshall, let's see if any other researcher backs him up...the accepted way for new theories to become practice.

Let's see if more of us truly chronic Lyme Disease patients, including those with Babesiosis get better.

The blanket statement that inflammation is the reason for our sickness is simplistic and unscientific. There are MANY bacterial and viral infections that simply destroy tissue...not through inflammation...and thus destroy the host. The immune system, EVEN IF IT IS 100% really has no chance.

Ebola, Flesh-eating bacteria, Hantavirus, etc. (to name a few)

No one knows everything about Borrelia yet...how can a Dr. who has not done specific research with this wicked stealth bacteria even presume to know what researchers have not seen in twenty years?

Is this protocol worth a shot?

Sure...what the hell...I have tried a lot worse.

Something that has been conveniently passed over on this thread...this bacteria EVADES detection by the immune system...YES, a 100% healthy immune system, so helping an immune system that is NOT compromised because it does not even know the pathogen exists is MOOT!

No one can argue against these facts...people who ACTUALLY DO RESEARCH on Borreila have shown this.

Another thing I HAVE to reply to...

We get more than our share of salt in the typical American diet...in fact, too much salt. When one has high blood pressure, the last thing we need is more salt...some poster stated high salt therapy is a consideration...WRONG. Does the words:
"Electrolyte Inbalance" mean anything? How about "fluid retention...increasing blood volume...increasing blood pressure" sound?

Not a medically sound move. All this suppossed "research" being done by posters is potentially harmful.

Oh, yes...the treatment of Marnie, who has been here longer than most of us, and does what she does WITH A GOOD HEART AND INTENTIONS, was disgusting!!!

Some of you people need to grow up, realize you are not the only sick people in this world, and learn proper manners and respect for other people.

Oh, yes, the use of the word CURE at any time on this board should be viewed with extreme caution.

NOTHING HAS BEEN PROVEN TO BE A CURE FOR CHRONIC LYME AT THIS TIME!!!

Possible partial cures? Sure.

Possible symptomatic relief? Yes.

CURE???? Proof first...then CURE.

Now what? Tomorrow I am going to my LLMD, ILADS Doctor to discuss this Benicar deal.

If I choose to try it, I will start next Tuesday, after another endocrine test.

ONLY WHEN WE HAVE ENOUGH OF US CHRONIC LYME PATIENTS ON THIS TREATMENT WILL WE BE ABLE TO GIVE A LEARNED OPINION.

By the way, there is a HUGE difference between someone who has been a "little sick" for a year, and people who have had this curse for 5, 10, 25+ YEARS!

What works for mild cases we "long termers" eat for breakfast.

For the record, I have no markers for inflamation, no immune system deficits, no hormonal deficiencies, yet I am still very sick.

I have a feeling that Babesia (which is like Malaria) is too overpowering for our immune systems to handle, in addition to cystic forms of Borrelia, which remain stealthy, are what causes the chronic form of this disease.

Now...let's begin a thread from people who actually are trying this protocol.

Enough said, as nothing constructive has been added on the latter responses, except insults and petty bickering...Time to put our bodies on the line, and keep quiet until we have some results.

Peace, love and wellness
JRW

"Your Doctor may suggest that you take an Angiotensin Receptor Blocker, such as Benicar (40mg every 8 hours). It turns out that Angiotensin II is not only important to cardiac health and blood pressure, but it also is an important part of the inflammatory cycle in the granuloma."

"Although 'Chronic-lyme' is a lymphopenic disease, chronic-lyme patients do not usually form sarcoid granuloma. Borrelia burgdorferi appears to be a pathogen with insufficient lymphopenic activity to proliferate sarcoid granulomas on its own. However, together with other pathogens, it is frequently found as a component of sarcoid inflammation."

If you read these 2 paragraphs, along with the rest of Dr. Marshall's work, you can see that CWD pathogens induce the immune system into producing inflammatory cycles called granulomas, and that the Benicar protocal supposedly helps to eliminate these inflammatory cycles.

Notice what he says about chronic lyme: He is saying that borrelia, ALONG WITH OTHER PATHOGENS (in other words, CO-INFECTIONS), work together to form granulomas (or sarcoid inflammation).

So sounds like to me that the Benicar may only benefit chronic lyme patients with co-infections only. Notice that Dr Marshall states that borrelia "appears to be a pathogen with insufficient lymphopenic activity to proliferate sarcoid granulomas on its own."

You bring up a good point, however you've made the wrong conclusion.

What Dr. Marshall meant in those quotes is that to produce the granulomatous lesions found in sarcoidosis, it usually takes a co-infection..ie, borrelia and mycoplasma and/or mycobacterium and borrelia...etc.

You say, "So sounds like to me that the Benicar may only benefit chronic lyme patients with co-infections only. Notice that Dr Marshall states that borrelia "appears to be a pathogen with insufficient lymphopenic activity to proliferate sarcoid granulomas on its own.""

Borreliosis has the same angiotensin dependent inflammatory cascade as co-infections do...Benicar will be effective for a single infection or co-infections.

The point you are missing is the discovery Marshall has made and that is a self-perpetuating angiotensin dependent inflammatory cascade...it doesn't matter if it's a chronic mycoplasma, borrelia, mycobacterium...etc...they can all trigger this pathogenesis.

In other words, a major part of our disease is actually a metabolic inflammatory disease...that started or triggered by a chronic persistent infection.

Scott

DO NOT add Benicar to a high dose cocktail of abx like that ....you are playing with fire!

You could have a severe herx doing that.

Step one is to clear the body of abx and then add Benicar and allow it to correct the immune system...then and only then...gradually add the minocycline, zithromycin, and co-trimoxazole as per Marshall's protocol.

IMO, those high doses aren't very helpful with this disease anyway.

Scott

I asked Dr Marshall the same thing. I am on 600mg Rulid and 2 Bactrim every day. He suggested stopping the antibiotics for 3-4 days and taking the Benicar. See if the symptoms are going to improve or if you herx..

once you know where you are..slowly resume the Rulid/ Bactrim combo and continue the protocol ( 5 weeks Dr Glasser )..

We need to Whoa a minute.

Since Benicar is a prescription drug - everyone's Dr. should familiarize themselves with it's anti-inflammatory mechanism (at the Marshal protocol dosage) and decide accordingly whether it's right for their patients and what abx to use, with what dosages.

And yes, having Babesia or Ehrlichia - or missing your spleen or gall bladder - having a liver problem to start with or GI problems
or having a number of additional problems
dissimilar than the Sarc patients, who have used this therapy, will all have to be taken into account.

I think this protocol has merit - and the word is OUT - so time will tell just how much other diseases can benefit.

I've been doing a literature search on ARBS for a while, and Benicar has helped West Nile Virus patients with the paralysis that sometime can occur... so it does appear that there is an beneficial, heretofore unknown, powerfull anti-inflammatory mechanism.

I know everyones anxious for answers on how this may affects ones individual health - but lets just slow down a tad.

Benicar isn't jelly-beans or golden eggs -
this should be approached like any other drug which has shown potential in a field trial.

You asked:

How does one know infection itself is reducing, other than hypothisis...
just wondering..
(repeated testing..pcr, ect..)?

****Sarc patients have one thing going for them in that they have extremely messed up levels of vitamin d creating a condition of hypervitaminosis (read the site for the actual mechanism). As their bacterial loads are reduced, the hypervitaminosis is corrected. So yes, they can measure their progress fairly well with blood testing, not to mention symptom relief is a good indicator of progress (for them, one major symptom is photosensitivity). It will be interesting to find out if some of us may also have hypervitaminosis, as I think it may explain my daughter's photosensitivity. We'll find out as we start getting our test results back.****

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..

******My understanding is that we will not need Benicar indefinitely, only until the bacterial load is reduced significantly. I read in one post where Marshall said that when other people get their yearly flu shot, we may want to do a course of abx, to prevent a recurrence of the infection. I think that Marshall believes we have a genetic susceptibility to these infections, although I'm not sure about that****

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.

****Benicar makes the abx much more powerful. As our bacterial load goes down, and the herxes lessen, we can increase the amount of abx we take. In phase II, Marshall introduces 2 or 3 new abx. He recommends certains ones that seem to have cover a wide range of organisms, but he also says that we need to be creative, and that this is where an infectious disease doc could be helpful in determining the best abx. At this point though, we should be feeling a lot better, and Phase II is a lot more about a thorough cleaning up of the infection. At least that's my impression. There's lots of info at the site******

Scott, J123 and Penny: please record your experiences with ARBs in JRW's thread and do so in a concise way--no chit chat.

As people begin to try Benicar please report your experiences in JRW's thread. Do not debate the merits of this or any other therapy in JRW's thread. Do not overstate, nor understate, the effects of Benicar on your recovery. Report faithfully any adverse events and treatment setbacks.

I am trying to obtain ARBs and will post about my experiences.

Let's get clean data on this one and warehouse it in JRW's thread.

[This message has been edited by phage (edited 05 May 2004).]

Note that INF-gamma is produced during inflammation...and remember those of us with chronic borreliosis have high amounts of INF-gamma. This is why we tend to be resistant to viral infections.

Anyway...the development of immunity to borreliosis can be measured by increased levels of IL-4. Unfortunately, those of us with chronic borreliosis don't make this shift. I.e., the immune system dysfunctions and is stuck in the Th1 inflammatory mode. This is likely due to several factors, however, Marshall's work may go a long way in explaining it.

Again, correcting this self perpetuating TH1 inflammatory cascade helps the immune system switch from inflammation to immunity.

I hope that is simple and clear for all to understand.

My son and I are both on heavy regimens including IV, and have been improving ..especially since adding Rifampin and Mino for Bartonella and Mycoplasma. (I also have Babesia)

It would be a tricky transition, maybe..to this protocol, my son's symptoms and brain infection were not too long ago ay very dangerous levels..I don't know enough yet about how/if this could fit in for him..

My son is under the care of Doctor Jones, who in my opinion knows more than any other LLMD of Lyme, co-infections, and the immune system in relation.

I intend to have a good grasp of the info and in depth conversation with him at our next appt.

The sarc info site would have the best references for this?

Thanks..

Mo

Question: would IGM serum (Immunoglobulin panel) reading below normal..be an indicator of inflamation blocking immune response?

Also..same question reguarding the 31k band..Doc K the LL neuro sited that band in my son as predisposing him to "autoimmunity"

thanks

quote:

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Originally posted by 24-bit:
One other thing I forgot to mention is that I have no inflamation markers at all,

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I haven't had any of the ordinary inflammatory markers either, even though I have obvious heat and swelling in my head, neck, and abdomen. My osteopath can always tell where I am inflamed just by touching me.

I had the tests done today for the markers Marshall is using, to see if those show anything. I'll be curious to see how they come out.

I've also been experiementing with protecting my eyes from light, as he told me it could be exacerbating my neuro symptoms. After three days, I'm finding my eyes now can't tolerate light like they used to.

Marshal says that is a sign of the inflammation due to excessive 1,25-D, and that if I persist, the sensitivity will receed over 6-18 months.

Yes, Scott, calling someone ignorant was unacceptable, as was the post from France saying some are stupid...

JRWagner,

Sott called many people ignorant and has been incredibly pushy. I (the post from France) told him to NOT call people stupid. Just to set things straight.

You said, "My son is under the care of Doctor Jones, who in my opinion knows more than any other LLMD of Lyme, co-infections, and the immune system in relation."

Yesterday I faxed Dr. J information regarding Dr. Marshall's protocol and his work. He should be getting up to speed with this if he's finding the time to study it. He seems pretty interested.

I've heard great things about him...I could learn a thing or two from him regarding my bedside manner ;-).

You make a good point...we often can't measure inflammation, but we can sure tell by clinical symptoms that it's there.

It's important to understand that some of these markers of inflammation maybe generated in local tissue areas and not systemic...ie, paracrine...not endocrine.

So, a blood sample may not catch this elevated INF-gamma...where a CSF sample may.

The important thing to recognize is that we are able to tell by how we perceive inflammation...ie, pain and other inflammatory symptoms.

There's still a lot to be said for the clinical aspects of this disease. IMO, that's still the best test. Proofs in the puddin'

Scott

[Note that INF-gamma is produced during inflammation...and remember those of us with chronic borreliosis have high amounts of INF-gamma. This is why we tend to be resistant to viral infections.

Scott,

How many more Urban Legends do you have up your sleeve? "We tend to be resistant to viral infections?!!!!!!!!!!!!" I only wish!

I checked myself on the scales this morning when I awoke. I've lost 7 lbs of fat from my mid-section...my pants are falling off of me...my metabolism is running great again... and my strength is increasing.

I had the chance to play golf last night and take some frustrations on the little white ball instead of you fine folks (I'm being sincere now).

Anyway... I was amazed at my strength...I was hitting the ball extremely well and long. I probably hit one of my longest drives ever last night...that was fun to experience.

My point is that I'm experiencing a dramatic improvement in my metabolism...many factors are involved here...but to simplify it...we know that extinguishing this horrific inflammatory cascade allows our body to correct the dysfunctional catabolic metabolism caused by this disease.

This is significant anecdotal evidence that things are resolving.

Scott

Haven't you heard of many of us noticing that we don't seem to catch as many viral infections and that when we do it's a good sign we are getting better? I've heard of this anecdotal evidence several times from individuals with this disease and this model of high INF-gamma levels explains it well.

I didn't say everyone...maybe you are different...however many have posted that experience here.

Scott,

I heard that "theory" many, many, many times, in fact as far back as I can remember being ill with ...CFS! Yes, that was one of the many total infounded things I heard whilst looking for an answer to my problems (although I had a beautiful EM rash on my leg, but those were the days!). And, I think it just doesn't cut it at all, only a few people don't catch viral things or get over them quickly, most (like myself) catch many and have a hell of a bad time surviving each one of them. So if you're trying to say that suppressing that part of the immune system is going to cure it all, based, among other things on the fact that people with Lyme don't get "viral things", sotty, not convincing for me
Nelly
I've heard of this anecdotal evidence several times from individuals with this disease and this model of high INF-gamma levels explains it well.

I didn't say everyone...maybe you are different...however many have posted that experience here.

Scott[/B][/QUOTE]

Therefore, my suggestion is this. Before allowing this topic to go past 249 responses, i.e. past 10 pages, it might be a good idea to start a new topic entitled Part II, but with the same subject headline otherwise. Then, add the necessary link to each topic, so that both topics are "inter-linked" together.

I am recommending that Free2Reckon be the person to create this new topic so that it will be more easily recognizable by more LymeNet members as being a continuation of this same topic theme.

However, if I'm mistaken about the ability of folks without high speed internet access to download this rather lengthy topic easily, then please ignore this suggestion, and I will delete it later, so as not to interrupt the flow of the conversation too much.

I'm still enjoying this topic very much, but I've been taking time out to try to do more homework at the sarcinfo-dot-com website. There's a ton of material there to work through. That's why I've quit posting temporarily under this topic, not for lack of interest, but because I don't feel I have much to contribute -- with the exception of this one little idea, that is.

Thanks for everyone who is participating in it. I'm enjoying ALL of the comments, both pro and con. I understand where some of the "contrarians" are coming from, though, because I too have some reservations and apprehensions about it myself. That's why I'm working so diligently right now to try to comprehend Trevor Marshall's ideas much better before deciding if I trust it or not.

Yes, we need both R&D and QA...I'm definitely a R&D type...you are QA person.

I respect that,