I do have to giggle a tad bit though. To the naysayer that has been following FreeToReckon around ....

completely unaware of the fact that Dr. Crist is your doctor AND our doctor and that "your LLMD ( our) is the best in the world and would NEVER put you on Benicar, I have one very small , childish thing to say:

nah nah nah nah nah

I want to point out....that Actos/Questran is a combo of a TNF reducing drug and a "Roto" Rooter detoxifier.

Trout

I have found him to be the most well-rounded and forward thinking that I have seen posted about here.

Trout

24-bit/Scott.....heck the heparin thing (babesia as a side benefit), the metals, the endocrine system, the Questran/Actos (for reduced TNF), and now this....he's got the best program running...IMO.

Also, when I took ACTOS, I reacted HORRIBLY. Got VERY ill, and it took me about 4 days to figure out what was causing it. The worse part was, it took me about 4 weeks to get back to my pre ACTOS state.

Anyone know WHY that would be the case?

Just because our doctor has received some papers, copied some links, and talked to Trevor doesn't mean squat.

He may just read the info and conclude that it's a bunch of hogwash.

But, guys..to me it doesn't make much sence to bash other Lyme Docs for not jumping on this immediately. In fact, I rather respect that.

All our doctors have different approaches and styles..some move quickly, others with calculated caution.

I am sure there are advantages and drawbacks to both approaches, and have seen positive and negative results come out of both.

These Docs, ALL of them, give their lives to this illness, and are the number one people on the frontlines..reguardless of how quickly they respond to new ideas.

If this proves to be safe and helpful..I trust out doctors will make use of it in due time.

Discussion, questions, answers..careful examination from those doctors who see merit seems to me to be what we should be looking for right now.

have we 'bashed' any other LLMD's?

I haven't...and PLEASE....don't turn this into a 'bashing' thread by 'suggesting' it here.

I respect ALL LLMD's...just because I am bragging on mine...doesn't mean anything other than that.

Penny...

Actos works differently and cause 'side-effects' or other reactions...I didn't take it either.

DMC....

Never meant it meant anything other than..he is looking at it.

Please let's NOT turn this into a 'bashing' thread as I know that Free, and 24 bit are not 'bashing' ANYONE we are all simply VERY happy that our LLMD seems to be VERY 'eyes' open about things...which is what is needed on ANY new treatment.

Trout

However, a short-term version of Questran is good when needed.

I only put that on here to say that he is cognisant to the
"OTHER" protocols and that he IS willing to use them.

I can think of several LLMDs who are in this awkward position. So, don't get too discouraged just because they don't jump on it right away, Scott.

Penny,
In response to your comment about reacting badly to Actos, it is known to lower the blood sugar. If you already have any tendency to reactive hypoglycemia, then it could have pushed you over the edge. That's all I can think of, off the top of my head, to explain your unusual reaction to it.

However, I would Not combine Questran with this, unless of course you are already stable on Questran at present. Questran can cause an awful "intensification reaction" of its own -- which would only muddy the water.

Back to Dr. C, though. I'm thrilled because I know that he has a patient who has had a history of a granuloma in her lung, which is still there. At one time, she had been given a tentative diagnosis of sarcoidosis. I think that she probably has the osteoporosis problem, too. This is really going to help him help her, I hope. Hooray!

I find it encouraging that someone is finally giving due recognition to the inflammatory processes that play such a major role in our disease process. If Marshall's model is correct, this it will have a huge impact on the economically driven aspects of the political arguments that currently deny so many of us treatment. This looks as if it may be a very cost effective means of dealing with chronic LD and co-infections. If that is the case and this therapy proves itself both effective and cost-effective, I suspect a lot of the controversy will slowly but surely fall by the wayside.

"Discussion, questions, answers..careful examination from those doctors who see merit seems to me to be what we should be looking for right now."

This was my main point in my above post. I guess I started getting the "feeling" from this and other threads that LLMD's who are not jumping are being doubted (maybe not bashed) in their possible understanding or use of Marshalls work..to me, these illnesses are so wiley and the complications so vast..that we need all the input we can get however it may come from LL's on SPECIFIC points that relate to whether this can indeed help Lyme patients.

(Not usually spitting.. but I do, on occasion, drewl in my sleep..

Mo)

Where in California is your doctor located?

A goodly number of the other leading LLMDs are under the gun, too, only just not as openly and publicly as Dr. B's case is.

That's why I worry that this idea might not get such a warm reception with the LLMDs. Remember, this is an "off-label" use of a relatively new drug. They would probably have to design a study and file an IND (investigational new drug) application to pursue this idea.

Therefore, don't be too shocked if your LLMD discourages you from doing this therapy, by trying to tell you that YOU are not a good candidate for it. He might not admit that he's not open to it. He'll only just tell you that he doesn't think it would be appropriate for You, without giving you any really good reason(s) why not.

That's why I think that the best bet would be to request to be tested first for the D-metabolites and for ACE, even if you have to pay out-of-pocket to do so. Then, you might have an arguing point later, if your lab values come back out of the normal range, or if the ratio of the two forms of D-metabolites is imbalanced.

Someone I know told me that he just took all this info up to Dr. Darryl See, in L.A. and he was VERY interested. I'm told he's pretty brilliant with this stuff, and you can find a lot of info that he's put out there on sites like immunesupport.com. Unfortunately, I think there's been some controversy around him and his involvement with the glyconutrient company Mannatech, and that he lost his position at one of the UC schools because of it. So I don't know if this is a good thing or not. My friend says he's a very caring doctor. Anybody know what the deal is with Dr. See?

TX LymeMom - I know doctor B is always being monitored, but if anything this would reduce the number of meds we are taking. On the average, people are probably on 3 or 4 abx's. LLMD's are already treating people without positive Lyme or co-infection tests. I doubt this would be much of hurdle. Tons of docs prescibe things for off-label use, it's just that our LLMD's happen to be under constant scrutiny. I was on an anti-hypertensive given to me by a psychiatrist 2 years before diagnosis to help with inflammation. It also helps that Benicar is not covered by a lot of insurance plans because it's not considered a preferred ARB...at least with my insurance and I have Blue Cross PPO. I'll have to pay cash and this way the industry won't get a buzz. The whole reason LLMD's are under the gun is because of the industry not wanting to pay for thousands in I.V. and expensive abx's.

All of this is only relevant if the Marshall Protocol works. That's still an "if" because it needs further testimonials than just Scott's. Another doc of mine, not my LLMD Dr. H, gave me some samples of Benicar today and not nearly enough to follow the protocol. But if it provides some relief from the inflammation at all and doesn't cause my blood pressure to drop too low, I think he'll be open to upping the dose. I already have minocycline on hand. I took 20mgs of Benicar twice today and a 100mg of Mino with it. I don't feel any different right now at all. I will say that an hour after I took the Benicar I broke into a sweat. Herx or sensitivity. I'm betting a immune response because benicar is relatively safe and my blood pressure is perfect. I'm not dizzy or fatigued from it in the least. I don't have the recommended dose of Benicar so it's not fair to evaluate anything. I talked to Marshall on the phone today and he said that 10-20mgs of Benicar creates the level of maximum hypotension Benicar could ever create. According to Marshall any dose above 10-20 cannot bring added hypotension and that any dose over that is where the benefits actually start to take place. So according to him I've only achieved maximum hypotension and haven't reached the point where the medicine provides anti-inflammatory properties. I see my doc in a week and will discuss trying to reach the recommeded 40mgs t.i.d. He's a bit timid about it and I don't blame him at all.

I wanted to add that I don't think Scott would send us on a wild goose chase. He has nothing to gain by passing on the information. If in the end he's the only Lyme patient who turns out to have benefitted from Benicar than we should at least be happy that someone feels better.

I can tell you right now, If anyone out there is hoping that the few people here playing with Benicar is going to give us answers, you are kidding yourself. I have not seen one person follow the protocol in full and that includes Scott.

On another point, the government is cracking down on the "off label" use of medication. There have been several drugs, Neuronton being one of the biggest that has come under close watch.

As I spoke with Dr. B very recently, I took the opportunity to also ask if Benicar might be something to add to my regime. The answer was basically: No. (It really was no more elaborate than that).

I did not ask the reason why, as I have decided to trust his decision on that right now.

Those comments will help you understand better the enormous pressure that the threatened loss of a doctor's medical license by state review boards plays in the practice of human medicine.

This kind of pressure has a very chilling effect upon dampening one's enthusiasm for innovation in clinical practices.

It's not that our doctors aren't clever enough to understand and appreciate this new conceptual idea. No, not at all.

I don't think you fully comprehend what you/we are up against in hoping to gain their acceptance for this potentially valuable therapy. Please try to recognize this aspect of it.

I can't help but feel that Richie Shoemaker might be very interested in this model for the disease process. As he has published books on the topic, I feel comfortable using his name.

He has been something of a maverick himself with concepts related to toxin mediated illness. The man is very sharp and even though his area of expertise is Bariatric Medicine, I would imagine he is quite capable of following and appreciating your and TM's concepts. Bariatric specialists are already familiar with similar research as it pertains to insulin resistance.

Afterall, he has already used the drug piaglitazone (Actos) because of its affect on on insulin receptor sites that he felt had been blocked by high levels of TNFa. His off label use helped his patients to tolerate the Questran protocol.

I intend to do all of the testing that TM suggests and follow up on this further. I feel I owe it to my doctor (his license)and to all the rest of the LD patients to investigate this thoroughly and take the necessary steps to insure a successful outcome. The politics of people medicine are sometimes frustrating beyond compare. Animals seldom file suit against their practitioners and there may be fewer OPMC type boards to intimidate them in their practices. While you all may be bitten in the literal sense, I would imagine that fewer of your patients exhibit the severe bi-polar responses familiar to practitioners who deal with the severe late-stage neuro-borreliosis patients.

Long term aggressive multiple abx's..IV..various other treatments and specific testing, even the newer utalization of actigall as a preventative for GB..

All this is "off-label"..Zithro is to be used in five day courses by the books..

Our NY Docs are under siege, it's true, and it must effect them on some level, however..aside from that, the ones I know have a natural approach that was there long before pressures rose..to be careful, meticulous, cautious and calculated in treatment and new ideas simply in the best interest of the patient.

I haven't seen that change much even with the OPMC breaking their knees.

They still treat out-of-the box, and do the right thing..despite it all.

My point is that I think there are some Docs that will approach this as thoroughly as they approach everything else..will want to see the connection in the D ratios and the immune cascade specific to the TNF-Alfa as it applies to Lyme..and if there is merit, and it is safe..I believe they will use it.

So far (we spoke today) my Doc says Marshall's work is very interesting. Pushing any further would not make him move any faster. I suspect he'll be looking at how it applies to us. I'm interested in those answers before anything else. We ran the tests at my request, to have a look at me..
all except the two specific D tests were run as baseline for me very early in my illness..so those I can compare to.

Doc J I see Thursday..he, too, is careful and thorough. He is the most unencumbered, however, which is why I am very interested in his take on the idea.

I'll post on the other thread for help as I have a packet to bring to go over with him.
I only have that one '96 paper that documents this specific immune disfunction in Lyme..
I'll put out a request to see if there's more.

Mo

Dr Marshall allows some flexibility with the dosage as long as it is consistent. ..the levels must remain constant..no missed doses.

LLMG's are smart folks...everyone is watching. Rifing, all these new treatments happened just this way. People reported success and others followed.. substantiating their findings.

DO admire the spirit, but it can't hurt to slow down just a teeny tad.

No offence, Free..just in the name of balance..people are looking at it...info seems to be circulating quickly in general..I'd say that's pretty darn good advancement..
Docs will have their own methods by which they assimilate and use judgement. Thay have good right and reason to do so, I'd say.

Lonestar..that's pretty funny..actually, I think my cat Stinker is bi-polar..he has a love hate thing going with his Doc..I could swear I saw him filling out papers just after his last check up..

Mo

I finally figured out what it is that people have a problem with and it's not that there are "enemies" here or that people don't want to get well. Here's what's really going on in peoples' heads:

"If Benicar combined with a low-dose abx works, then I've been wasting my time and money all these years with limited progress and poisoning my body with high-dose abx."

That's it. It's a scary thought...ain't it.

[This message has been edited by kaos (edited 12 May 2004).]

"If Benicar combined with a low-dose abx works, then I've been wasting my time and money all these years with limited progress and poisoning my body with high-dose abx."

That's it. It's a scary thought...ain't it.

Here's a scary thought what if this unproven by any scientific people in that field, that benicar given to people with lyme.

Actually harm someone?

Need to slowdown and let experts who do this examine Marshalls thoughts.

Geez, thanks for the sophisticated eye-opening remark!

You just saved me a packet of euros, I was just about to embark on some Woody Allen-style psychoanalysis!!

You've just made things heaps better for me now that I know I don't want to get better!!!!

Nelly

I'm speaking up here.

I have met Scott personally, and knew him BEFORE he found the Benicar Protocol.

He has explained to me (in person) in GREAT detail the mechanisms of this disease and the cascading effect it has on us. HE understands the model...because he has a MEDICAL degree.

PLease...don't give me this...he's a Veterinarian argument either...that doesn't hold water...where do you think the bulk of our surgery, medicinal and mainstream alternative medicine techniques come from...careful monitoring of these models happens in...yes....the Veterinarian labs across the U.S.

Scott works on stuff like this ALL DAY LONG as a research DVM.

He was struck down by...MS...3 years ago...but, he researched it and found the REAL cause of his mysterious illness such as myself. So his intentions ARE genuine.

He has helped many in here inleaps and bounds...and now some of you are e-mailing me privately to check on his 'real' identity.

The ONLY way things have changed here in IOwa is by standing in the middle of the crowd and
hollering about Lyme...we have tried the "old fashioned" conservative ways in the past..it doesn't work.

His method is correct...in fact I will be meeting with Senator Harkin next Tuesday....any guesses who else will be there beside me?

Stop the negative comments....I'm with 24-bit on this as we both share the same LLMD...he is one of the most forward thinking there is...and I am NOT bashing any others by saying that.

He voice will mean alot...I look forward to hearing his outlook on this....in fact...I'll sign up for it.

Why? If this is 'ground' breaking...I want to be involved...I WILL take the chance...I WILL take the tests.......and I'll smile through it all.

God Bless the Innovators in Life....otherwise we wouldn't have the wheel.

Trout

I find the info intriguing, many do..and I hope for "slowing down" on both yay and nay comments, both of which are over the top whether nixing the therapy, or declaring it the cure IMO (not enough info, not enough questions answered either way), and obstructs looking at and discussing the info rationally..with interest, and seeking answers from our doctors on the specifics. I'm all for finding out more..but these threads are difficult to navigate. Just trying to have the right info to talk to my DOCTORS treating Lyme about is more than frustrating because of so much baloney to cut through.

many very valid comments are ignored and never addreses as folks jab at eachother and pass judgment and declaration that really means very little in respect to the issue. Oy..

It would actually be very funny, if I wasn't spending valuable time just trying to get pertinant info and questions answered to speak with MD's on this.
I would also like SPECIFICS on what other Lyme Docs think about the ideas.

(and I razzed Scott out of respectful humor..he himself admitts his unbridled excitemnt. My point was that the Docs I deal with will examine this as they do everything else. That's a GOOD thing..they shouldn't be pushed nor doubted in their processing information, no good comesof that.)

The emotions flying off in all different directions, the "siding", ect., ect..just gets in the way of the real solid information.

Mo

But to call people that are cautious, essentially idiots and breeders of the status quo is wrong. According to Marshall around 200 patients have been following this protocol. When the FDA study was done, around 1400 patients were in the clinical trial of Benicar. The max dose that was tested was 40mg. Marshall is recommending 3 times that and in another post it was 6 times that or 240mg.

I have seen no evidence that the ``trial'' that Marshall is putting together is an effective study of the effects of high dosing of Benicar. In fact, some of the symptoms that people are complaining about can be found under overdosing. Then on top of that we are getting bombarded with wild statements that can not be backed up with proof. Don't forget that most of the people on this board don't know each other, which makes it more difficult to gauge character.

Scott has been around the block, he should be the first to understand what is going on in our community. There are a number of posts from Scott that do nothing more than to create a perception that Marshall's protocol is gaining steam, and in some cases I am suspicious some of these ``conversations'' ever took place.

Again the real reason of my posting is to make sure that the new folks or those that are having trouble comprehending don't get caught up in the hype, after all it took most of us some time to get up to speed. We all need to take responsibility for what we say on here. There are a lot of lives that hang in the balance.

Hwlatin,

My feeling exactly! And the reason why I am pissed off is that I too am very interested in the discussions re the Marshall Protocol and I think the sheer volume and over the top tone of Scott's posts are detrimental to healthy discussions.

As I said before, I have given the info to my ID doc (who is a Professor in Infectious diseases in a hospital setting here in Paris, and who is very aware and open), so I hope I am not counted as someone who is "against the truth"! (I can't really believe I am writing this: "the Truth"!!!)

Nelly

My Gosh....been through it all...and, YOU know that I DON"T jump on just any band wagon..I have added SOME protocols to my regimen...not ALL that I investigate.

And..this approach has helped me TREMENDOUSLY!

WHAT I am saying here is this...

It is his enthusiasm that we need!!!!

Especially when it is as potentially good as this protocol.

Why?

Don't you think that one of the LLMD's will see it's potential and then actually START a controlled study? I think they will...that's why I am hoping Scott's efforts don't go unnoticed...

You said:

[b]The max dose that was tested was 40mg. Marshall is recommending 3 times that and in another post it was 6 times that or 240mg.[b]

I am all for caution, but please go double check this information before asserting it as fact. It's been tested by the manufacturer at much higher dosages and still found safe.

"...The FDA NDA package (the documents Sankyo submitted to the FDA in support of their licensing application) included a study showing linearity up to a 320mg dose...

...The New England Journal of Medicine, Nov 10, 2003, carried an editorial titled "ARBs in MI - A Matter of Dose" which discussed the emerging data that ARBs need to be dosed at levels above the levels anticipated when the FDA initially approved the drugs, in order to gain protective benefits that nobody ever anticipated when these drugs were first commissioned for treating mild hypertension..."
www.sarcinfo.com

penny

I'm also pleased to report that one of the top internists/immunologists in San Francisco is VERY interested in Marshall's research, so your efforts are definitely not wasted!

He said he'd never thought of this disease model before, and he's a brilliant doctor. He ordered the tests for my friend as she has all the symptoms of SARC, including funny looking lung xrays, lyme disease, osteomyelitis, bone resorption, asthma, the works. I'm really hoping this is going to be the answer she's been looking for. If it helps her, the fact that he's an influential doc could really help lend credibility, and means many people could be helped. This is good news for us all.

My own doc is also very enthusiastic. He immediately sees how this could help so many of his chronically ill patients. He's looking even deeper into the protocol, and is very excited about my progress. He also sees that this is a very safe and very inexpensive treatment compared to so many of the therapies his patients are on, like i.v. rocephin, etc. Insurance companies should love that.

I could be crazy, but I honestly feel the most optimistic I've ever felt for our entire community. And you can ask my friends, I'm usually VERY skeptical and very reluctant to jump on ANY bandwagon, after everything I've tried and been through.

penny

The information that I received today about testing was direct from the manufacturer. I called them today to discuss the drug. I only included the information that they gave to me over the phone.

I was also told that testing was limited to single dosages. It is illegal for the manufacturer to disclose anything beyond what was in their application and approved. So in theory, i guess someone who had an inside connection might be getting different numbers.

Everything over was tested on rats, not humans. I am actually getting sick of all of this to the point I am really begining to not care.

I was a victim of off-label use by a doctor who became involved with people like Marshall and Scott. I nearly died from it. I was lucky. Many others were less fortunate and have died from off-label uses from drugs like Phen/fen and Neuronton.

As I have said many times I find Marshall's research interesting. It might be just what we need, but I have a ton of questions. Some I am getting answered by third parties that are being objective not subjective.

Wish me luck Monday with getting my doc to get me on the full dose or at least close to it. There is a very funny thing that happens when I take the very small dosage of Benicar that I have now. It temporarily disables some of my inflammation. Asthma is one of my major problems and Benicar really seems to assist in blocking that. I can't say more because I'm not on the full dose. I do take minocycline with it too. Marshall suggested that I cut my 20mg tablet into thirds for a daily dose. It's all I have for now so it's what I'm working with. I can't believe I can breathe tonight. I haven't been able to breathe freely in 4 months. It wasn't until the 3rd day that the asthma significantly reduced. I missed a dose this morning and noticed the asthma creeping back. Later in the evening I resumed the Benicar and it went away a little while later. Chance or not? My asthma is pretty severe. I'm betting on the Benicar.

Just in case my doc doesn't come through, I'm armed with the literature and have 4 random appointments with suggested doctors to try. I don't know if they will help, but the word will be spread even if they don't. Who knows, maybe they will react like the doctor in San Francisco. I know of another doc outside of San Francisco that is helping Sarc patients with the Benicar protocol. If I have to make the 7 hour drive in the future, I would do it. Hopefully I won't have too. It's a miracle that I even got 20mgs/day. I have to be honest, my doc was weary. Under Marshall's suggestion, I'll ask the doctor if I can sign a release so the doctor will feel less liable. I've already been on anti-hypertensives so this is not an issue. I had my blood pressure taken today and it hasn't dropped at all. It's not the side effects of the med that docs will worry about, it's the possible drop in blood pressure that the drug was originally developed for. After my doc sees that my BP did not drop, it might be o.k. I totally understand the skepticism from the medical community. We're not even MD's on this board and we're skeptical. It's natural. But I think Penny and Scott are being treated as though they own stock in this venture. Be happy for someone who feels well, just as you would if someone said they were cured with abx's.

Pursuing a doctor willing to treat with Benicar reminds me so much of when I was lost and looking for a doctor to prescribe antibiotics. It's the same thing. Always been a chase with this illness. I don't think I will ever get well if I sit back and watch.

With that said, I actually like reading the posts of people who talk about the pros and cons. I've been thinking about it and I think it's most constructive as long as it's not slanderous. I think we're all a big family and all families argue sometimes. But remember that people can get their feelings hurt. If I remember correctly, Gigi took a break from Lymenet because of this.

24-bit, I'm also envious that Scott and Penny are able to get their hands on this. I'm glad that they aren't failing because I feel like they are doing it for us.