His therapeutic protocol using Benicar and the low dose abx therapy is fitting nicely with my investigation of the pathogenesis of this disease.

Dr. Marshall has shown that angiotensin II plays a major role in the inflammatory cascade, cause of disease and symptoms in sarcoidosis, which has a pathogenesis the same as borreliosis. I.e., they are likely the same in many cases.

This therapeutic protocol of Benicar and low-dose of minocycline, azithromycin, and cotrimoxazole, is likely going to be a very important treatment regimen for those of us with borreliosis.

More to come...

Scott

SarcInfo has a massive amount of information that is, unfortunately, not as well organized as it should be. People with a diagnosis of sarcoidosis are willing to study this website until they finally see the overall picture, but lymies may not be so patient in so far as they are lymies and not sarcoiders. Please be persistent--you will not be dissapointed.

Thanks and God Bless You,

The minocycline therapy seems to be similar to how it's used in treating RA and lupus, according to the late Dr. Thomas McPherson Brown's protocol. Also, the mention of cell wall deficient bacteria matches with Dr. Brown's ideas about mycoplasmas, also.

The main difference I see between this program and the treatment of LD is that LD has now expanded to include many other tick-borne co-infections, most especially babesiosis. For treating that, an anti-malarial type drug is required.

I just asked Dr. Marshall today regarding low-blood pressure and Benicar.

He said that Benicar can still be taken by folks with low-blood pressure...it won't aggravate the low-blood pressure condition. That effect plateaus as seen in this graph: (see number 2)
http://sarcinfo.com/faq.htm

Yes, the abx protocol is similar to Dr. Browns work which I've said is a good protocol. Benicar makes dramatic improvements to this regimen.

Note he is using bacterial protein synthesis inhibitors...remember that bacterial lipoproteins are causing this disease.

When the abx regimen is combined with Benicar, it turns out to be a very effective threapy.

Be patient and study this...as I've said earlier this is very significant.

Please don't underestimate this protocol.

quote:

---

Originally posted by robi:
My LLMD says doxy works better for Lyme.

---

When you LLMD said that doxy works better for LD, he might not have been comparing it to minocycline because they have very similar effects. Perhaps he was comparing it to some other antibiotic instead.

Minocycline has better intracellular penetration than doxycycline does, so for intracellular Bb, it's considered superior to doxycycline. That's why the dosage is lower. However, minocycline can cause such intense side-effects at first that it's very difficult to become adjusted to it; thus, it's less popular among LLMDs that the more familiar doxycycline is.

Here's what it says about Benicar: "Blocks the vasoconstrictor and aldosterone-secreting effects of angiotensin II by selective blocking the binding of angiotensin II to the angiotensin 1 receptor in the vascular smooth muscle."

You would need to ask a pharmacist to explain the similarities and differences between these two drugs beyond what I've copied here out of the NDH.

Check out this website http://www.ti.ubc.ca/pages/letter28.htm
as a quick and easy resource for info about some of the Angiotensin II Receptor Blockers.

And here is the rap sheet in pdf format for Benicar http://www.fda.gov/cder/foi/label/2002/21286lbl.pdf

I have a gut feeling that this one may afford some serious relief by reducing inflammation. We still will need to deal with liver detox, neurotoxins, heavy metals and a good nutritious diet with appropriate supplements for repair, but I am of the opinion that if the damage from the above were halted and reversed (and reducing inflammation is critical in achieving that), then our immune systems could fight the bugs. Some of us may still need antibiotics but many will rebound enough that the immune warriors can do the job alone.

I have been dealing with this since 1974. During that time I've been bed ridden and I've worked 60 hour weeks, I've felt horrible and I've felt good (rarely great).

Looking back over the years I think that the times when I was at my worst were always when my immune system was most stressed, that is, after any major traumas (the kind you can't rally to overcome but require acceptance and/or significant personal growth), be they mental/emotional or physical.

I am hopeful once again with my current regime which includes Ozone therapies, metal detox and perhaps starting this week, ARBs.

Remember - the Sarc people use doses much much less than Lymies. Some of them herx on 50mg of Mino.

Doxy is an excellent drug for Lyme and Ehrlichia - As we know - some abx work better than others for Lymies.

The point is - for Sarc - Mino is the base favorite.

Based on the Sarc info - I used Mino as my base drug when I pulsed others with it.
But I used Doxy prior to that (and it was effective for me).

Barb

Barb is a living example of someone who has been able to overcome both lupus and LD, and in a relatively short period of time, not to mention overcoming babesiosis in spite of being without a spleen.

Regarding mino vs doxy....there's good evidence that mino is significantly better. Here's a reference that Dr. Marshall pointed out to me:
http://www.postgradmed.com/issues/1997/04_97/cunha_1.htm

Please note that Burke Cunha is an authority in this area.

IMO, the debate of mino vs doxy is pretty much settled...mino is clearly better.

Scott

Benicar is the best angiotensin II receptor blocker (ARB) for this.

It's important to use Benicar...

Dr. Marshall's work has made it clear that this is by far the best ARB to use. I urge you not to settle for a substitute.

Scott

No one knows better than I how much we DON'T know about Lyme -

I certainly don't profess to know everything - but I have researched inflammatory diseases (and was doing that long before I knew I had Lyme) because of my autoimmune diagnoses.

I have had a remarkable recovery of Lyme symptoms post abx therapy...
And I now know that my symptoms originally attributed to Lupus, Sarc and "complex autoimmune Disorder" were Lyme. And the
sutoimmune heymolytic anemia (with RBC distruction) was Babesia.

But hey - maybe Lupus and Sarc are just different presentations (based on tissue type) of the same pathogen based disease -

I don't have the answers - but I can tell you what's worked for me, and when I think someone's work is worth looking into.

And I think the info on Sarcinfo is pertinant to Lyme.

I just started using Benicar yesterday and within a few hours I began noticing some significant benefits of symptom relief.

I asked Dr. Marshall if this can occur so quickly and he told me that it can and does.

I am so impressed it's hard to describe.

Please share this vital information with those you know in the Lyme community and those in the other chronic illness community such as FMS/CFS.

This treatment protcol is likely going to also impact RA, Lupus, Parkinson's, Multiple Sclerosis,...and many other disorders which have Th1 inflammatory cascades.

We are so fortunate to have access to Dr. Marshall...I can't give him enough accolades. What a blessing for all of us!

In awe,

Scott

Scott,

Do you know how the "sartan" drugs like Benicar relate to the imidazoles?

Same question as with the RA tx with very low dose minocycline: do we (people with TBDs) have infection in the brain/CNS that requires abx at a much higher dose to cross the BBB?

I know your answer will be: "it's the cytokines and the BLPs that are causing our brain symptoms". I agree that there seem to be plenty of evidence that the bugs (and their toxins) have vasoconstrictive effects, and can therfore cause restriction of blood flow to the brain. but how can you be sure that this not concomittant with actual infection in the brain?

And some of us definitely have a very mixed cocktail which can include protozoans, which will not necessarily be dealt with by the sarco protocol.

Benicar is not sold here in France and the other sartan drugs I have found here all have a diuretic included.

Would other substances with vasodilating properties work also? Some people use Gingko Biloba for eg.

Would Martin's regimen have similar effects?

Just a few questions I had when I first visited the sarco website. I would like your opinion.

A lot of people with fibromyalgia say they can feel lumps and bumps underneath their skin. There was a rumor awhile back, either here or on the eurolyme forum, that these bumps are granulomas and that either Bowen or Ignex actually found bacteria in one of these things. A few months ago I had a graduate school Immunology course wherein a professor discussed briefly the issue of granulomas. I talked to him afterwords and he assured me that you don't have to have a genetic predispostion to form granulomas. I doubt Dr. Marshall has ever claimed otherwise, but he says little about the fact that any normal person can form granulomas in response to persistent antigen. My professor also assured me that granulomas can become fairly large and that if they formed under the skin they could be palpated. I have wondered, then, if the distinction between fibro and Sarc, Lyme, etc. is partly a matter of tissue distribution (based on the strain of bacteria?). It would be fantastic if the Fibro folks would get these bumps biopsied to determine if they contain CWD bacteria.

I read that fibro women also were reporting that they go into remission during pregnancy. So I did a poll at www.chronicfatiguesupport.com
and was amazed at how many women reported the remission during pregnancy only to relapse harder than before after the delivery. What I think may be happening is that the immune suppression that occurs during pregnancy (this is well documented; it prevents the women's immune system from rejecting the fetus) gives these women symptom relief, but also allows bacteria (spirochetes? mycoplasma?) to proliferate so that the women end up worse than before.

>Please share this vital information with those you know in the Lyme community and those in the other chronic illness community such as FMS/CFS.

Dr. Moskowitz's ARB protocol is sort of circulating in the the above CFS/FM site but it has yet to catch on. I tried to steer them to SarcInfo, apparently with no takers. It might help if they heard from some of the rest of you.

Yes, you are on the right track.

These disorders all have a similar pathogenesis which is being triggered by a pathogen like borrelia, mycobacterium, or other CWD pathogens or other microbial pathogens.

The pathogens trigger a Th1 inflammatory cascade which can itself be self-perpetuating.

This Th1 inflammatory cascade will cause many diseases, disorders and symptoms.

IMO, we've found the main cause of our problems and we also have good therapeutic protocols now in place to treat it.

The Marshall Protocol is posted on the www.sarcinfo.com site - The info is available to anyone.

Chronic Lyme disese causes a self perpetuating Th1 inflammatory cascade that is triggered by angiotensin II receptor activation in macrophages.

It's this Th1 inflammatory cascade that causes our disease.

This perpetual cycle is broken when Benicar is used. Benicar blocks the angiotensin receptors on macrophages and thus blocks the Th1 inflammatory cascade.

This reduces the inflammatory response which is causing our disease and all of our symptoms.

I thought that people with chronic lyme/CFS and most chronic illness had an immune system that was heavily weighted toward an overactive TH2. And that it was TH2 cytokines causing symptoms, not TH1. I thought we wanted a shift toward TH1.

As far as I can tell, these studies are saying it is an overactive TH1 response. My IL-2 (TH1 cytokine, I think) is already low and have indications of a predominant TH2 immune system. Can someone clear this up. Thanks very much.

Do yourself a favor and have your 1,25D levels tested as per Dr. Marshall. Make sure the samples are frozen.

That info will help give you an idea if Benicar will help you or not.

Personally, I'd just use Benicar.

IMO, it likely will help.

The dysfunctional immune system in these chronic diseases is poorly understood by conventional medicine. It's not an overactive Th2 cascade that is the underlying cause. In my opinion, that's a poor model of pathogenesis and doesn't fit well with what I see in my research.

Specifically what markers did they use to say your had a strong Th2 cascade?

Since Benicar corrects the immune dysfunction in this disease, the immune system can begin to kill a lot of borrelia.

In my case, the borrelia load is relatively light and I'm experiencing good symptom relief early. It won't surprize me if I get some herxes pretty soon though...I'll let you know if I do.

The advantage of Benicar is that it improves the immune systems ability to kill borrelia and at the same time reduces the herx response...what a wonderful combination.

Scott

It's pretty well agreed upon in the literature that Lyme and Sarc have activated cytokines og the TH1 subset.

There's debate over with Th1 or Th2 or BOTH are activated in Lupus.

Asthma is an example to the TH2 activated subset.

My IL-2 (a TH1 cytokine) is low. My %B cells are low (I think this means polarized TH2).

According to conventional wisdom as I understand it, polarization of TH2 results in allergies and chemical sensitivities (MCS). It is also found in many CFS patients immune profiles and I think this is pretty well established (I have classic CFS symptoms).

It is also less effective in fighting chronic infections. Since all these things are sometimes or often found in lyme patients I wonder how many actually have too much TH1, or are we just talking about one TH1 cytokine in particular (TNF-alpha). If you have lots of TH1 you should be in better shape to fight intracellular infections, like lyme.

My biology is weak and my understanding based on my own tests and what I read on the internet, so maybe it is wrong. But I would not want to decrease IL-2 if it is already low.

Maybe we have a wide range of cytokine profiles, so one drug may not be appropriate for everyone. If Barb is right about lyme being TH1 dominant then maybe I don't have lyme, but I need to know why I felt better on rocephin and herx on all these abx.

Unfortunately, the response become dysfunctional when cytokines get in severe imbalances and the Th1 response begins to be ineffective and begins to cause more damage to the body than it does good.

The Th1 cytokines maybe elevated, but the Th1 immune function is very poor.

Remember what Albert Einstein said, "What is measured is not always important, and what's important cannot always be measured".

Dr. Marshall gives us some good markers to go by and 1,25D might be one of the best for this purpose.

Scott

I should have added that the angiotensin-II activation of Th1 goes into a futile cycle...and that this perpetual inflammatory cascade exacerbates the Th1 immune dysfunction.

Scott

What parts of the protocol are you using? Are you avoiding sunlight and vit D?
Are you taking the mino or do you plan to after a week's time?
What dose of the Benicar are you taking? tid or qid?

Funny the way this came up at this time. I have an appt with my doc tomorrow to discuss and start the treatment.

If Moskowitz is using Benicar only at bedtime, then he is not using it the way the Marshall protocol recommends to use it.

The only way you'll be able to decide what you want to do (if you don't understand how Benicar reduces inflammation) is to have your Doc call Trevor.

Barb

A: Benicar and Mino

Q: Are you avoiding sunlight and vit D?

A: No, it is not necessary to do that when taking Benicar, Vit D is not a problem when Benicar is blocking all of the A-II receptors.

Q: Are you taking the mino or do you plan to after a week's time?
A: I started mino right away...I'm not severely infected so I can do that. Folks with heavy infections may need to wait after a week.

Q: What dose of the Benicar are you taking? tid or qid?

A: I'm taking 40 mg tid, but again, I'm moderately infected with moderate symptoms. Folks with serious symptoms and disease can use it as high as 40 mg every 4 hrs.

Q: He is unsure whether to go with the Moskowitz or Marshall approach to the frequency and dosage of the ARBs. Moskowitz uses a single dose at bedtime.

A: I strongly encourage you to follow Dr. Marshall's protocol. My investigation into the two made it clear to me that Marshall's approach is far superior.

You'll be amazed at the results.

Day two on Benicar for me and I'm elated with the results!

I slept so well last night.

I have the sense that the ceiling that was limiting my recovery has been shattered and I'm heading for remission.

Oh happy days!

Scott

I believe that Dr. Marshall is a PhD, not an MD, so he is involved with research and doesn't practice medicine...Barb can give more info on that.

What I'd recommend you do is to print Dr. Marshall publications and take them to your doctor. Then have your doctor contact him for any details he may need.

If Dr. Marshall gets swamped, I'd be happy to help clarify any questions that your doctor may have too.

I'm confident this is going to work well for you too.

Relief is spelled B-e-n-i-c-a-r,

The only way you'll be able to decide what you want to do (if you don't understand how Benicar reduces inflammation) is to have your Doc call Trevor."

I strongly agree with Barb's comments, Benicar should be used at high, frequent doses to provide complete or significant angiotensin II type 1 receptor blockade.

Folks Benicar is extremely safe to use (as long as you are not pregnant or might be pregnant).

The real danger we face is this seriously damaging inflammatory disease we call borreliosis.

If you stop the inflammation, you stop the disease! Simple as that!

You can't stop the inflammation if you don't stop the futile inflammatory cycle which is being maintained by angiotensin II type 1 receptor activation.

Block this receptor with Benicar and you block the futile cycle and stop the inflammatory cascade.

quote:

---

Oh happy days!

Scott

[/B]

---

I'm so glad you started this treatment. I felt like I was all alone - I needed confirmation that ARBs work. Even though we are taking different ARBs - they WORK!! It does appear that yours is better. I didn't get good results in the beginning. I'm still having symptoms that break through, particularly headaches and neck involvement, BUT still not aching and am fatigue FREE!

However, I would not race out and try Benicar w/o getting some of the immune testing done. Maybe the test Dr. Marshall suggests is adequate. I don't know.

In any case, the way I understand it Benicar will suppress TH1, the major component of your immune system (prevents cancer, fights infection etc.) and lowers blood pressure by about 10 points (if I am reading the graph right).

It is true that the literature suggests that lyme inflammation is possibly related to upregulated TH1, but we are all different. People with 'CFS' have the opposite problem and usually have downregulated TH1 (per Dr. Cheney and the hundreds of patients he has evaulated). But what is CFS? And what if it is possible to have a condition called CFS and also have lyme?

If you need that part of your immune system down regulated and you can handle a lower blood pressure then I would definitely try it.

quote:

---

Originally posted by Scrambled_brain:
.

It is true that the literature suggests that lyme inflammation is possibly related to upregulated TH1, but we are all different. People with 'CFS' have the opposite problem and usually have downregulated TH1 (per Dr. Cheney and the hundreds of patients he has evaulated). But what is CFS? And what if it is possible to have a condition called CFS and also have lyme?

[This message has been edited by Scrambled_brain (edited 28 April 2004).]

---

I respect your skepticism, but I encourage you to be confident with Benicar...I've done a lot of homework already for you.

The 1,25D levels will give you an indication of your inflammatory condition.

I would race out and try Benicar. There's no reason not to...safety is not an issue unless you are pregnant or could be pregnant.

Please understand that the inflammatory disease we are suffering with is extremely dangerous. Avoiding relief from this disease is much more dangerous than taking Benicar.

Benicar does not suppress the TH1 immune system as corticosteroids do. It actually corrects the dysfunctioning Th1 immune system making our immune system function better.

So, if you are concerned about the health of your Th1 immune system, it's vital to stop the inflammatory cascade that is causing it to be dysfunctional.

We have dysfunctional Th1 systems too...you are not getting this point.

People with 'CFS' have essentially the same pathogenesis as we do. They don't necessarily have borreliosis...but they have the same inflammatory cascade and dysfunctional immune system that we do.

Remember, Benicar doesn't down regulate the immune system, it calms it down so it can function properly.

The beauty of Benicar is that it doesn't lower your blood pressure beyond normal...you really don't experience significant problems with this...maybe slight dizziness but that is transient and resolves with time.

Try Marshall's protocol and you'll have to change your username to....

I-Can-Think-Clearly-Now :-)

I don't know for sure if Benicar is going to work as well for all cases of borreliosis as it has with me. I pray that it does and I'm optimistic it will in many cases.

I follow a very comprehensive thearpy that I've designed and in my opinion the vital missing piece has been Dr. Marshall's work.

So, once I added the Benicar the therapy is more complete and the recovery seems to be occuring very rapidly.

quote:

---

Originally posted by free2reckon:
Scrambled,

Try Marshall's protocol and you'll have to change your username to....

I-Can-Think-Clearly-Now :-)

Scott

---

Scott,

Thanks for the high quality humor and for addressing my post. I will continue to follow this with interest; but I'll never understand it. We are lucky to have someone with a rich biological background on Lymenet.

It is a complicated cascade of events

When we (lay people) use the words - suppressive, modulators, regulators, up/down regulated - they aren't always used correctly
so misunderstandings occur.

The very best thing to do is to have your Dr. call Trevor after printing out his protocol.

It's so nice to have something like this to be enthusiastic about.

I think what you are saying is that from my enthusiasm you are able to tell that my mental condition is better...and I'll give that a resounding, Oh yeah!

Angiotensin II and the ensuing inflammation that we are dealing with causes significant cognitive and behavior effects. It causes mental disorders in us, ....plan and simple.

But, when you correct the problem...ie, the inflammatory disease, the rest takes care of itself.

So, what I'm saying is that yes, it will stop the terrible brain fog, depression, and anxiety that this disease causes.

I'll be blunt...most neurologists or psychologist have no clue about this...total ignorance. Unfortunately, our LLMDs don't know this either..

You folks are fortunate enough to know more than your LLMD...get them up to speed!

Thomas...this is the protocol we've been looking for!

Scott

Some of us have neurally mediated hypotension (NMH). This is very common in CFS, and is also seen in lyme, according to Dr. B's guidelines. We get light-headed after standing, tachacardia, increased thirst. Some of us drink salt water/electrolyte mixtures to keep our blood pressure up. I even infuse fluids IV.

I am so glad you are on this board. I have been following this post with great interest. I have sun issues, as well as the anxiety, heart racing issues of Lyme.

I have downloaded Dr. Marshall's protocal and may talk to my doctor about this. I look forward to hearing about your continued progress with this particular drug regime.

According to Dr. C, 33% of lyme patients are already low in aldosterone. It is one of the most common hormone problems in lyme, according to his test results.

Bb is a metalloprotease as most pathogens are. It is a "parasite", plain and simple. It is using our supply of Mg...to a great extent (!) if you look closely at the abstract from Romania. Run the math (Mg levels prior to and after supplemented). That's a HUGE loss.

Bb uses Mg (ours) in its enzyme reactions, according to Dr. Gary Kaiser, microbiologist.

The tremendous loss of Mg spirals out of control and causes ALL of the symptoms of this disease.

We must restore the balance. Mg is needed to make healthy antibodies, to make ATP, to control over 350 enzymes and is capable of mDNA repair.
http://www.mdschoice.
com/elements/elements/
major_minerals/magnesium.htm

We need adequate levels of Mg (and Ca) to fight this pathogen ourselves. Our OWN antibodies are highly targeted. Support the immune system, restore the normal level of Mg and maintain it until the infection is gone.

This is why Valletta's U.S. patent: "Magnesium for autoimmune" worked. It took months, but it worked. He cured RA, ulcerative colitis, and invasive bowel cancer in 6 months using IV Mg pyrophosphate and sub. B6.

This bug dives for cover (cyst formation) in the presence of acids. We must keep the "medium" favorable in order for our own antibodies to be able to attack and destroy the KEET form. Key and lock mechanism. Highly targeted and "safer" overall in my opinion.

I also have an email in to Dr. Moskowitz asking his opinion on the different approaches and will report back if there is anything of interest in his reply.

I'm cautiously excited. I have been disappointed many times before but this just provides so many missing pieces that I am hopeful. I will continue with the metal detox and Ozone therapies and report back if I have any significant improvements.

In one of your posts on this thread, you shared that you follow a very comprehensive program and that this(benecar, ect.) is the missing part.

Would you mind sharing what your program entails...its possible that what you are doing "combined" with Marshalls protocol is whats helping and not just Marshalls protocol....

Marnie, magnesium depletion does *not* cause all the symptoms of this chronic infection.

You asked how symptoms can come and go quickly and how this ties into pain from inflammation.

The magnitude of inflammation can change rapidly. And the severity has to build up to a certain threshold level before you have pain - and then it can subside somewhat, pain may subside - the inflammation may below the threshold for pain - but still there.

Think of the inflammation that causes hardening of the arteries - you don't feel that untill it's almost too late.

But inflame a nerve ending - and you know about that pain right away.

Barb

It may cause some initial dizziness but as you get well, that resolves and the hypoperfusion begins to improve.

My peripheral perfusion has dramatically improved in only 3 days.

Benicar can be used in cases of hypotension.

You are correct...we are going to have to educate our MDs so they know this is safe to do. They are ignorant about this.

Help them help us!

Scott

Scrambled said, Some of us have neurally mediated hypotension (NMH). This is very common in CFS, and is also seen in lyme, according to Dr. B's guidelines. We get light-headed after standing, tachacardia, increased thirst. Some of us drink salt water/electrolyte mixtures to keep our blood pressure up. I even infuse fluids IV.

Surely this drug would be contraindicated for those of us with this problem. In any case, I don't think my doctor would prescribe a drug to lower my blood pressure when it is already low, I am light headed, and asking for IV fluids.>

I refer you to my Lyme report posted in the files section of Eurolyme group:
http://health.groups.yahoo.com/group/EuroLyme/

I include some of my regimen in there...I need to update this info...it changes so quickly it's hard to keep up with.

Scott

quote:

---

Originally posted by Byron2:
Scott...

In one of your posts on this thread, you shared that you follow a very comprehensive program and that this(benecar, ect.) is the missing part.

Would you mind sharing what your program entails...its possible that what you are doing "combined" with Marshalls protocol is whats helping and not just Marshalls protocol....

Thanks,
Byron

---

Marshall's program advises to use just BENICAR without the added diuretic.

quote:

---

Originally posted by bpeck:
J123:

You asked how symptoms can come and go quickly and how this ties into pain from inflammation.

The magnitude of inflammation can change rapidly. And the severity has to build up to a certain threshold level before you have pain - and then it can subside somewhat, pain may subside - the inflammation may below the threshold for pain - but still there.

Think of the inflammation that causes hardening of the arteries - you don't feel that untill it's almost too late.

But inflame a nerve ending - and you know about that pain right away.

Barb

---

I still don't understand. What causes the inflammation to be reduced below the threshold? It seems once the cascade starts and the trigger remains in place that the cascade will continue or worsen, but in fact it improves. (Compare it to sarc.)
Does pain caused by hardening of the arteries improve without treatment? Why does a trigger mess up the cascade one day and not the next? Something is causing the cascade to be interrupted (I'm glad it is). It's been my belief that it may have to do with borrelia activity in our cells. Is it possible that the cascade only occurs when borrelia divide? Could that correlate to migrating symptoms - depending on which population is dividing (brain, joints, muscle,etc)?

1) When I first got lyme, I did a ton of research (I even tried hyperbaric within the first few weeks, and had meningeal/neck pain after a hyperbaric session that indicated to me that the antibiotics were not effectively penetrating my CNS and it had already disseminated within just 2 weeks). That first summer I had a ton of inflammatory symptoms particular muscle pain, fibro etc all over. I tried questran at one point but did not know about sugar-free compounded questran so all I had available to me was the questran that contains sugar. Within an hour of my first dose of questran my pain magically went away. Now remember, I wasin the acute stages of early infection. I tried to continue the questran but the sugar present in it exacerbated yeast problems making bladder pain and problems etc so I went off.

2) Rosanne, and James JOhnson, and others who got well on ICHT saw their symptoms miraculously resolve after a few weeks of treatment. What does this say? That the entire inflammatory cascade can be effectively reversed within weeks if the infection itself is eradicated.

Therefore, though I am interested in symptomatic treatments, I am of two minds about the idea that the immune system has gone kaflooey and needs to be reigned in. Maybei t really does and this is an effective approach--there are many roads to Rome.

This is body chemistry. Everything is always in flux (the state of change within certain parameters).

Without a (bio) Chemistry background, I know it's going to be hard to understand some of this stuff.
Inflammation comes in many flavors.

What we are talking about here is chronic inflammation and the chemicals ( damaging oxygen free radicals, and other damaging chemicals) produced once it gets started.

Once these chemicals reach certain threholds- pain is usually produced ( and tissue damage can occur without the pain).

You ask " What causes an increase or decrease of inflammation"

That can be MANY things - every thing we put into our bodys affects the body. That's why there are so many ALT.MED remedies that DO work - they modulate chronic inflammation -
certain events/foods drugs exacerbate inflammation or dampen it depending on what's going on at the cellular level....
tissue type and individual immune system function also play a role in how these drug work.

Barb

Barb

I think you're very right to stress this, infectious and inflammatory processes are very complex, so many factors interacting! That's why I tend to be a bit cautious when people claim that "this is the answer and it is SIMPLE".

I know this is not going to help much, I truly hope this Benicar stuff is part of the answer for some of us at least.

And I hope it IS a free lunch!!

Once you get the epiphany of Dr. Marshall's discovery, it makes the complex problem much more simple to understand.

Actually, Benicar is a relatively simple way of stopping this problem.

It simply blocks angiotensin II type I receptors. This blockade stops the self-propelled inflammatory cascade from continuing.

I don't know what's so difficult to understand about that...aren't I being clear?

Don't make this harder than it really is.

The reason things appear complex is because folks don't have a good understanding of them.

When you really understand it well, you can simplify it.

This will help all of us...not just some!

We've been burned so many times with false hope.

Please comfort your skepticism and allow yourself to have some hope, at least one more time...because I'm confident that this is not a false hope.

I have a strong background in medicine, immunology and other sciences. I've studied this well and have a strong knowledge of this disease.

I'm sharing my investigations with LLMDs and helping them learn more.

I don't post messages on this site that I don't have good understanding about.

What's my incentive to give false hope...I won't do that to the people suffering with this disease!

I have never boasted on this site about any therapy as the potential cure...until now!

I'm delighted to be able to say, with confidence, that this protocol is the cure we've been looking for.

We all have a bright future again...

Thank God!

I haven't seen you talk about the dosing schedule he uses for abx, and whether it makes sense for Lyme.

I understand that the Benicar, by reducing inflammation, is supposed to make the abx more effective. I see that Marshall believes his entire protocol, exactly as it is, will be effective for Lyme. What do you think?

Barb, I've seen parts of your protocol, and I know you did nort follow Marshall's to the letter. What are the reasons you deviated, once you understood what he was doing?

Do you believe his protocol would be effective, or have thoughts on how it needs to be different for Lyme?

I've given my LLMD a copy of Marshall's articles, so hope to hear something of what he thinks, as well. I'll share that when I hear from him.

The effect of angiotensin II on platelet intracellular free magnesium and calcium ionic concentrations in essential hypertension.

Touyz RM, Schiffrin EL.

Clinical Research Institute of Montreal, University of Montreal, Quebec, Canada.

OBJECTIVE: To assess the effects of angiotensin II on intracellular free Mg2+ and Ca2+ concentrations in platelets from normotensive and hypertensive subjects.

DESIGN AND METHODS: Seventeen normotensive, 25 untreated hypertensive and 18 treated hypertensive patients were studied. Intracellular Mg2+ concentrations were measured with the fluorescent dye mag-fura-2-acetyoxymethylester (AM) and intracellular Ca2+ concentrations with the fluorescent dye fura-2AM under basal conditions and after stimulation by angiotensin II, saralasin (angiotensin II antagonist), arginine vasopressin and endothelin-1.

The effects of increased extracellular Mg2+ concentrations on intracellular Mg2+ and Ca2+ concentrations were also determined.

RESULTS: The intracellular basal Ca2+ concentration was significantly higher in the untreated hypertensives compared with the normotensives and treated hypertensive subjects (150 +/- 14 nmol/l versus 120 +/- 17 nmol/l for normotensives and 124 +/- 8 nmol/l for treated hypertensives).

The basal intracellular Mg2+ concentration was significantly lower in the untreated hypertensive compared to the normotensive and treated hypertensive groups (0.37 +/- 0.08 mumol/l versus 0.58 +/- 0.09 mumol/l for normotensives and 0.52 +/- 0.11 mumol/l for treated hypertensives). In the hypertensive groups, inverse correlations were found between intracellular Ca2+ and intracellular Mg2+ concentrations (r = -0.44, P < 0.05) and between intracellular Mg2+ and diastolic blood pressure (r = -0.35, P < 0.05), while a positive correlation was found between intracellular Ca2+ and systolic blood pressure (r = 0.41, P < 0.05).

Exposure of the platelets to 1 nmol/l angiotensin II significantly increased intracellular Ca2+ and significantly decreased intracellular Mg2+ concentrations in all three groups. The angiotensin II-evoked effect on intracellular Ca2+ was exaggerated in the untreated hypertensives and blunted in the treated patients (basal versus stimulated: 150 +/- 14 versus 217 +/- 20 nmol/l in untreated hypertensives; 124 +/- 8 versus 140 +/- 10 nmol/l in treated hypertensives).

Saralasin (0.1 mumol/l) abolished the effects of angiotensin. Arginine vasopressin (1 mumol/l) increased the intracellular Ca2+ concentration, whereas endothelin-1 (1 nmol/l) had no significant effect on either intracellular Ca2+ or intracellular Mg2+.

Increasing extracellular Mg2+ concentrations led to significant reductions in intracellular Ca2+ concentrations in all groups and a significant elevation of the intracellular Mg2+ concentration in the untreated hypertensive patients only.

CONCLUSIONS: These data demonstrate a relationship between angiotensin II and intracellular magnesium and calcium. In hypertension, angiotensin II-stimulated calcium responses may be related to simultaneously decreased intracellular magnesium concentrations.

Q: I haven't seen you talk about the dosing schedule he uses for abx, and whether it makes sense for Lyme.

A: I am taking low-dose mino with the Benicar. I'll add azithromycin later and then maybe cotrimoxazole at some point...I don't know for sure yet.

Marshall's abx protocol makes perfect sense when you understand the pathogenesis of this disease.

Remember the BLPs (bacterial lipoproteins)in my study on pathogenesis....they trigger this whole disease...I had already figured out that the best abx protocol for us was low-doses of bacterial protein synthesis inhibitors...ie, tetracyclines, macrolides, co-trimoxazoles.

These all inhibit the pathogens ability to make BLPs...which trigger the inflammation and disease. So, I agree with Marshall use of low-dose bacteriostatic abx.

Q: I understand that the Benicar, by reducing inflammation, is supposed to make the abx more effective. I see that Marshall believes his entire protocol, exactly as it is, will be effective for Lyme. What do you think?

A: Yes, it should be very effective for chronic borreliosis...I also use a lot of alternative and supportive therapy, but this is a major part of what I believe is the best conventional therapy.

I appreciate your trust...

I read the sarcinfo website and everything Dr Trevor Marshall a few months ago and I think I understand what he and you are saying.
It is just that you make certain leaps of faith that I am not prepared to make like being sure that there is no brain infection in Lyme (only BLPs and toxins that give us our brain symptoms), and I would like to be surer of this before I embark on taking a sartan-type drug to block inflammation

you write:

>It simply blocks angiotensin II type I >receptors. This blockade stops the self->propelled inflammatory cascade from >continuing.

>I don't know what's so difficult to >understand about that...aren't I being >clear?
Nothing hard to understand there, that is simple, I got that much from Dr Trevor Marshall ages ago,and you are prbbly quite right that such inflam cascades are taking place in PWLyme and causing symptoms.

My questions are:
What proof do you have that it is the main or even only process that is at play in the pathogenesis of our illness?
Do you have proof that these inflammatory cascades (triggered by BLPs) are JUST having deleterious effects (eg could we imagine that the cascade of cytokine is in fact play a part in keeping bugs in check, and that we might fare badly in the medium term without these cascades?

I know you seem very sure of yourself, but I, in the past heard exact same discourses re cortisone tx. I was mad not to take it, it was going to stop all my symptoms.

My other question is; HOW CAN YOU BE SURE THAT SOME OF US DO NOT ACTUALLY HAVE INFECTION IN THE BRAIN THAT WOULD NOT GET BETTER ON 25 mg OF MINOCYCLINE EVERY SECOND DAY! even with Benicar.

I have asked you this question several times but got no answer

Can you tell me this because I am very sick and I can fool around with new fads?

What you are writing might be enough for some people but I want more specific reasoning and data that clearly says: your symptoms that quack like brain infection are not really brain infection symptoms!

I will then gladly drop my highish dose abx and hit the Benicar and be happy ever after.

Nelly

PS does it work for other bugs? Have you looked into the pathogenesis of other TBDs?

I so appreciate your sharing this encouraging protocol. I'm going to talk to my doctor about it next week.

Do you think it will be a problem that I'm already on the low dose minocin? Will I have to stop, or can I just add the Benicar?

I'd also be interested in hearing your complete protocol.

I'm overly tired at the moment and having difficulty organizing the info, especially in a way that would make most sense to my doctor. What would you recommend would be the best information to take him, so that he can easily and quickly understand the protocol and the rationale behind it?

thanks,

Have you talked to Dr. C about any of this? Do you plan to?

You have done so much for the Lyme Community and Dr. C is one of the best LLMD's around - so I'm hoping you'll share this with him.

1) All drugs have side effects. No drug is simply benign. There will be a bellcurve here and some people will not tolerate the drug well at all, others will do fine with it. We need to know who those subsets of people are before we start assuming it's just fine to add this in to the protocol

2) Inflammation as you point out is a two edged sword. Our body definitely uses it to wall off bugs and keep them from spreading, as well as for lots of other reasons (inflammation attracts some of the cells that then kill the bugs). OTOH, it is true that chronic inflammation is deleterious and also quite possible that certain bugs might adapt and use the inflammation to sequester themselves from appropriate abx and other anti pathogenic meds

3) Another good point--for an infection disseminated throughout the CNS, what does low dose or pulsed abx do longterm?

4) Another very good question--how does benicar work in rickettsia, babesia, bartonella, etc. Do they all produce BLP's and/or the inflammatory cascade in us is so similar in each of those chronic infections that benicar is the choice?

I am not intending to do anything more than ask questions, as I usually do. I guess I will try to find some answers. It looks like this might be a very useful drug to add into the armementarium, like others; some find heparin helps, others find plaquenil helps, etc etc.

Perhaps it's even useful to help someone through a particular bad herx rather than being used daily longterm.

I discovered Trevor's Sarcinfo board
when I was about half way through my 1.5 years off and on abx for Lyme.

My Doc & I had already designed my protocol
(for Lyme) starting with *lower* doses of abx and pulsing them, then ramping them up to theraputic doses based on my body weight because my herxes were so bad ( and I had a ton of neuro symptoms).
My Abx were chosen by their tissue penetrating ability - working up to the drugs that penetrated better because we belived my Lyme bacterial load was SO high I couldn't withstand the better penetrating drugs to start with.

I started with DOxy and worked **up** to Mino. The additional drugs I used (Bactrim and Zith) to pulse in combo with Mino were the ones the MP recommended - But I had already researched them, and everything I seemed to be doing just FIT with what the Sarc people were doing (albiet not exactly).

I didn't need any convincing that inflammation played a big part in my on- going symptoms, and for years used ALT.MED and other therapies to try and dampen inflammation.

I was also already on very high doses ibuprofen as an anti-inflammatory because I already knew I was loaded with inflammation
with high COX2 production.
(I have pathology reports on tissues taken from my 3 major surgeries over a 20 year period).

After participating in the Sarclist - and realizing how much overlap of symptoms there was between Lupus, Sarc and Lyme - I starting thinking the MP protocol could work for Lymies for whom symptoms persisted after
long-term abx, and that inflammation control was the key. On several occassions I refered Lymenet to the Sarinfo list.

The information Trevor had on excess Vit D production in the body exacerbating and perpetuating inflammation made sense to me because I *had* UV sensitivities in the past.

I did not use Benicar, but had I found Sarc info earlier, I would have used it...
and in the future - if I have symptoms return I will use it. (I'm still feeling great - no symptoms)

IMO, A Late stage Lymie's protocol based on Trevor's protocol may have to be tweaked - because by the time most long term Lymies find the Marshall protocol, their GI tracts are messed up from high dose long term abx...

So I dearly wanted a LLMD to talk to Trevor. I STILL want a reputable LLMD to talk to Trevor.

I know you guys know how MUCH I stressed
controlling the herx in Lyme (and NOT toughing through it).
This is one area where the Marshall protocol is so different than a Lyme protocol:
The Marshall protocol, puts a inflammatory blockage in place before abx, controls the HERX which controlls additional inflammation, which allows the body and the abx to be more efficient.

Control of inflammation is paramount.

Barb

I just touched a little on this Sat at our meeting...that was when you left to get your wife.

Yes, this will help the myriad of symptoms we deal with...and likely MCS too.

I agree with you that ALL lyme is NeuroLyme
and at least for the untreated - bacteria is **IN** the brain.

Symptoms are not just from inflammation - but more inflammation just makes everything worse... then you get sertain cells perpetuating more inflammation and it can be never ending for some people.

I know in my case I could not have tolerated Mino right out of the chute.
And I've told Trevor that.

I've already told ya'll I have a Lyme friend that had seizures from too fast a Lyme kill in the brain...

Thanks for the replies. I especially appreciate Barb's willingness to go into some of the details.

As they say, the devil is in the details.

I wonder how it could be worked if someone is already doing well on high dose abx. Would just adding in Benicar cause more intense herxing, because the abx would be more effective? Or would it simply keep the inflammation levels lowered?

I'm also interested in how this works in the CNS. And what about if someone is responding to a cephlasporin? Would that work with Benicar?

I know T. Marshall is very adament that ONLY his protocol works for everybody. Maybe he's right, but the truth is, nobody knows yet.

As I said, I've already given some of the sarcinfo to my LLMD. Unfortunately, he's not one of the biggies, so he may not have much influence. On the other hand, he is very open to new information, and is likely to give it a trial if he feels it is valid.