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.
Lymies who are already using an ARB for high blood pressure may have the easiest time talking their docs into this approach, since it does not involve adding a medication, just changing the dosing regimen.
Thanks and God Bless You,
Pam
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.
It's good to know about both programs as long as we don't get ourselves too confused and as long as we pay close enough attention to both their similarities and their differences.
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.
Scott
I'm glad you're around today because I have another question for you, but I don't want to change the theme of this topic, so I'm going to post it as a separate topic with your name in the headline. Please look for it -- to follow just as soon as I can compose it, after posting this response.
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.
If you want to learn more about the use of minocycline in LD, do a search here at LymeNet and you will find lots of information. The search function is located up at the top of the page in very small letters, right beneath where it says "Post Reply".
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.
Robi,
Yes, minocycline would treat the same co-infections as doxycycline would since both are so closely related.
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.
Good Health to all.
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.
I'm pointing this out for benefit of folks who are newer LymeNet members and who might not otherwise be able to appreciate how much Barb's ideas and research have to offer us.
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.
Barb
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.
Nelly
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.
[This message has been edited by phage (edited 28 April 2004).]
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.
Scott
The Marshall Protocol is posted on the www.sarcinfo.com site - The info is available to anyone.
Barb
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.
Scott
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.
[This message has been edited by Scrambled_brain (edited 27 April 2004).]
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?
Scott
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.
Barb
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.
[This message has been edited by Scrambled_brain (edited 27 April 2004).]
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
[This message has been edited by free2reckon (edited 27 April 2004).]
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.
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.
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,
Scott
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.
Scott
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.
[This message has been edited by Scrambled_brain (edited 28 April 2004).]
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).]
Just a note about CFS- I was diagnosed with lyme and then also with CFS (because I fit the criteria). I don't know if I agree with it. (also misdiagnosed with MS). We don't really know if CFS is a separate disease or a part of many other diseases. Nevertheless, I took cozaar and it had amazing results for the fatigue. I'm sure benicar will give equal or better results.
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 :-)
Scott
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.
Scott
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.
Sincerely,
Scrambled_brain (still, but I haven't tried Benicar yet)
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.
Yes - Trevor Marshall is a PHD, not an MD.
Barb
I am now in pretty severe pain which may have also been compounded by being given IV levaquan. This, I have read, can cause peripheral neuropathy. Lovely. In addition, my stomach is all messed up now from My LLMD giving me massive dosages of oral and IV antibiotics and I am in pretty bad pain there too. The cure, so far, has turned out to be as bad if not worse than the disease. Cheers.Thomas Parkman
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.
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 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.
Thank you for sharing. Barb
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.
I'm not trying to pick apart this possibly useful therapy but trying to find out who should and should not be trying it.
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.
Health to all
In your theory how do you account for symptoms that last for a few days then resolve only to return days, weeks or months later? Bacteria are the trigger which causes a cascade of cytokines. The bacteria are still present - in whatever form (you said all forms are capable of triggering symptoms). What is happening during these periods of relief? Are there natural ARBs in our bodies or foods?
I'm really trying to understand...
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
Marnie, magnesium depletion does *not* cause all the symptoms of this chronic infection.
Whoever posted aboud adolesterone, thanx. I'd also like to know what contraindications there are, and what are other long term side effects of benicar. In addition, perhaps there are other ways to understand the inflammatory cascade and mediate it.
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.
Barb
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.
Scott--I had read your good article posted on EUrolyme previously but if you have time, since this feels to you like the missing piece in a potential cure, it would be really useful to hear your history (in brief) on here, and what your symptoms were previously, after variuos treatments, and when you started benicar. It sounds like it is certainly having a great effect on you but I would love to hear the specifics. Thx in advance.
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
[This message has been edited by bpeck (edited 29 April 2004).]
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!!
Nelly
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!
Scott
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!
Scott
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.
Thanks to both of you in persisting in this communication. This looks like it could be important, but it will take a while for us to wrap our little Lyme minds around it. It's simple, if you just buy the concept, but trying to understand enough to evaluate it is NOT simple.
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.
PMID: 8390527
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...
Scott
tROUT
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,
penny
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.
Thanks,
Julie from Tx
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.
There is too much to be discovered yet, to say anything more than, this is interesting, worth discussion, and some people may want to try it.
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
[This message has been edited by bpeck (edited 29 April 2004).]
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.
Scott
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...
Barb
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.
I, personally, would rather be on lower amounts of drugs, if it would work. Even better, I'd like to be like Barb, and not need anything right now!
Q: 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?
A: It's not the only process that is causing pathology, but it appears to be the only part that is self-perpetuating.
Q: 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.
A: I'm not sure... I'm not taking 25 mg ever other day...I'm taking 100 mg of mino every day. Benicar has the ability to modulate the immune system so it is able kill the infection much better and it also improves the ability of abx to kill pathogens...according to Dr. Marshall.
Q: Can you tell me this because I am very sick and I can fool around with new fads?
A: I'm asking you to trust me...this is no fad! I know many that read this information are very ill and suffer greatly. I have no incentive to give any of them false hope...why would I do such a cruel thing?
Q: does it work for other bugs? Have you looked into the pathogenesis of other TBDs?
A: it works well for all CWD pathogens, and likely many more. It's ideal for the chronic bacterial infections like borreliosis.
Scott
Q: 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?
A: Just add the Benicar along with the mino.
Q: I'd also be interested in hearing your complete protocol.
A: See my report on Eurolyme
Q: 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?
A: This will be the toughest part for most of us. We'll need to give our LLMDs some information. Take Dr. Marshall's protocols with you. You can also have them contact him or me.
Scott
Q: Have you talked to Dr. C about any of this? Do you plan to?
A: I called him today...he's very excited about this new development. I've forwarded Dr. Marshall's protocol to him...please encourage him to investigate this with me more...we need all the help we can get.
Thank you Julie...I appreciate your encouragement.
Scott
Exactly! Barb... We have to stop pouring gas on the fire before we can put it out. Scott [This message has been edited by bpeck (edited 29 April 2004).][/B][/QUOTE]
Q: 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? A: If you can already tolerate high doses of abx, you'll likely tolerate high doses of Benicar well and you'll likely have great results with it. Q: I'm also interested in how this works in the CNS. A: Benicar is great for symptoms of neuroborreliosis. Q: And what about if someone is responding to a cephlasporin? Would that work with Benicar? A: It's important to use bacteriostatic abx such as the tetracyclines, macrolides and cotrimoxazoles. Scott How would you know that? And: If you can already tolerate high doses of abx, you'll likely tolerate high doses of Benicar well How would you know that and what possible connection could there be between tolerating a drug that lowers blood pressure, and tolerating antibiotics? Also the: I am asking you to trust me... These are people on the internet whom you don't know personally and you are not a physician. Thank goodness you are adding in to your posts that they should bring Marhsall's material to their LLMD's. Let experienced doctors decide how and when and on whom to experiment with this protocol. I have some time myself so I will put these questions to Marshall myself. I don't believe he could/would say the things being said on this thread, since he has little experience with lyme and limited if successful experience in sarcoidosis. Try to temper your enthusiasm with a bit of caution, please. As Lisa who is a nurse pointed out on the other thread, she has seen benicar's side effects and would not give it to her children (advocating this drug for children before even seeing how it fares in adult lyme patients seems somewhat reckless to me.)
I stand firmly by my statements! Q: IE this appears to be the only part of the inflammatory process that is self-perpetuating... How would you know that? A: Dr. Marshall's work clearly indicates this. Q: And: If you can already tolerate high doses of abx, you'll likely tolerate high doses of Benicar well How would you know that and what possible connection could there be between tolerating a drug that lowers blood pressure, and tolerating antibiotics? A: It has to do with bacterial load and the body's tolerance to the BLPs being released. If you can already tolerate high doses of abx, you will be able to handle Benicar very well...and like me, will probably notice benefits with the first dose. Q: Also the: I am asking you to trust me... These are people on the internet whom you don't know personally and you are not a physician. Thank goodness you are adding in to your posts that they should bring Marhsall's material to their LLMD's. Let experienced doctors decide how and when and on whom to experiment with this protocol. A: This group knows my work...they understand that I have an extremely strong medical background and that I have spent an enormous amount of time investigating the pathogenesis of this disease. I correspond with many of them via email. I am teaching the LLMDs about my work by sharing this info with them. Q: I have some time myself so I will put these questions to Marshall myself. I don't believe he could/would say the things being said on this thread, since he has little experience with lyme and limited if successful experience in sarcoidosis. A: Good, for I know he'll echo my statements. Q: Try to temper your enthusiasm with a bit of caution, please. A: When in my opinion, the cure for our disease has been discovered, why are asking me to temper my enthusiasm? Q: As Lisa who is a nurse pointed out on the other thread, she has seen benicar's side effects and would not give it to her children (advocating this drug for children before even seeing how it fares in adult lyme patients seems somewhat reckless to me.) A: I disagree with Lisa and I'm not reckless...I'm knowledgable and confident! Scott
Just a little history about Sarcoidosis And these aren't just internet stories: Their blood is documented periodically as most of them (during flares) are lymphopenic (as I was) indicating supression of that class of cells. AND, almost all have have documentation of the ratio between Vit D, and 1,25D dropping as their symptoms subside. Whether the bugs infecting them are also some of the (co)infections infecting a Lymie, remains to be proven - but it's plausible that there the same (meaning CWD Secondly, the Sarc people have it pretty bad, as all the Sarc Docs in the US think it's autoimmune, and thats THAT. If any DOcs read the resarch and Plus most people with Sarc have to wean off predisone, which isn't an easy task. In my opinion, from what I've seen of the Lyme community and how the disease is treated - the inflammation part of the picture is not addressed, or given the significance it should be.. especially when it's even more elevated while herxing. Also in my opinion, no ones really looking for the reason why a certain percentage of Lymies just don't respond to abx or can't get off them. I think this might be because the abx can't work because the inflammation is so high in these people... this is the connection I see So- rather than argue about this - I'd like to see some of the LLMDs really take a look at what's working for these Sarc people. In the mean time - as always- we all have to decide what we'll take or not take depending on the risks as we see them. Barb [This message has been edited by bpeck (edited 30 April 2004).]
riversinger, I don't think that's an accurate characterization of Dr. Marshall's position. He claims that his protocol is optimal for sarcoidosis. That's not saying much. The standard of care for sarcoidosis is prednisone. This drug has serious side effects and suppresses the immune system in a global sort of way. If the antigen that incites granuloma formation in sarcoidosis is, in fact, a microbe, then it is wreckless to give the microbe free reign through the use of prednisone. Merely telling sarcoid patients to get off prednisone would be enought to make Dr. Marshall's protocol superior to the standard of care. This business about vitamin D dysregulation needs to be put in perspective. Originally, Dr. Marshall had nothing to do with showing this effect in sarcoidosis. There is complete consensus about the vitamin D dysregulation in sarcoidosis. Dr. Marshall's observation (concerning vitamin D) was more modest than that. He reasoned that, given the unregulated conversion of 25(D) to 1,25(D) in sarcoidosis, the best laboratory marker of the disease might be the ratio of 25(D) to 1,25(D). His work at SarcInfo bears this out. Dr. Marshall is a very sharp guy, but the D-ratio business is not the evidence of that. His D-ratio merely shows that he can do arithmetic, while his colleagues are sleepwalking. He has some preliminary evidence that vitamin D dysregulation may be relavant to other diseases and is interested in exploring that further. There are people here who have cooperative physicians (a concept I still can't wrap my mind around) and there's no harm in them having their 25(D) and 1,25(D) levels measured (You have to get both of them measured, otherwise the data are useless). Does Dr. Marshall's D-ratio apply to Lyme? There's only one way to find out, and noone will be more curious, and open-minded, about the results than Dr. Marshall.
What one wants to do then is individual, I think. What percentage of sarc individuals Marshall is treating are doing mino alone, and what percentage have added in benicar? Maybe that's on his website..I only recall that 50 had been treated (not 100)...and a reference to a pubmed abstract on mino that showed it helped at least some cases, although not all...it was a small study. I personally think the diseases will be like a venn diagram, with some overlap in the two circles, but that they are not essentially the same disease i.e. caused by the same microbes, in most cases. I also think the flagella in lyme is key (which is not about being CWD). CWD may be important too, but for instance I just read an embargoed abstract of a study to appear in Nature shortly, about the fact that people with Crohn's have antibodies against flagellin antigens; that controls don't.
Walt Tarello, an italian DVM, has done some really good research into the infectious nature of CFS. And it's animals that are often used for research. I don't think DVM's should be underestimated at all. Hey they were treating ulcers in pigs far before humans had the same treatment opportunities. I'm very grateful to Scott, a DVM and medical researcher, for sharing his impressions and enthusiasm here with us about this protocol. And it's so encouraging that he's seeing such immediate effects, and understands the mechanisms behind it. This week is the first week I've felt truly optimistic in a while. And that's because this is making sense, in my own realm of experience. penny
Thank you for those kind words of support, sometimes I wonder if I'm posting to the right group...I appreciate the support. I'd really rather be golfing or fishing instead of doing this work...but I am compelled to help others. After suffering with this disease, it was a clear calling to me that I am in need to help those suffering with this illness. So, I try to help, Scott
riversinger, I don't think that's an accurate characterization of Dr. Marshall's position. He claims that his protocol is optimal for sarcoidosis. I've been reading the sarcinfo site, and Trevor Marshall states very clearly in numerous places that his protocol is correct for Lyme as well as sarcoidosis. I actually searched for any reference to Lyme in particular. He is in fact quite sharp in correcting people. I can understand, he has worked hard to establish this, and is concerned about what will happen if people try all kinds of variations. He also may very well be right. We just don't have the documentation yet on the results in Lyme, so I am trying to understand the rationale that makes it a reasonable assumption. I'm reading Marshall's papers, but they are technical, and it takes time for me to understand them. I personally think it would make sense to do his entire protocol, which includes measuring the markers he uses to show inflammation, and then response to medication. That is part of how we would know if it is applicable to Lyme. But I am also trying to understand things like when and why it makes sense to take lower doses of abx. I know that he says it is to keep the herx, and thereby the inflammation down. But if someone is already doing well on high dose abx, does that mean the conditions don't apply? That they have inflammation going on that is not noticed? That there is a different kind of infection being treated? Remember, Marshall is looking at treating a CWD infection. If we have a mixed infection, things may work differently. We don't know yet. It looks to me that including the recommended testing would be an important part of finding out, as that seems to be a known correlation with the inflammation being treated. You ARE posting to the right place. Please keep doing so. I don't post on my experience with Rife very often since it doesn't involve jugs full of ABX and often turns into a bash-a-thon. However, it has helped us immensely, and my wife has not required ABX for a year and remains remarkably symptom-free. Please be assured that many are following this Benicar thread with great interest. Let's keep spreading and sharing the information and let the results do the talking. Dave
You got 90+ posts on just this one thread. Most are queries into this protocol. Looks like a number of us will be testing for D1,25. I hope people report their results. Sounds like you are on the right forum to me I know you from this and other forums, and I believe you when you say you are on a mission to help people. We are trying to educate ourselves a little. We will never understand the underpinning science like someone with a medical background. Yes, we are scrutinizing this thing as much as we can, as we should be. I really hope you don't feel you are being bashed. Thanks again for sharing your research.
That's hard to say if the zestril has helped relieve your inflammation of the joints or not...it sure can't hurt. Yes, Benicar helps me significantly with my neuro symptoms...yes, inflammation is causing these too. Scott
Also, I have had my D tested: These were both within normal as was my D ratio (1.5) So I don't know what to make of this. I did have a granuloma, I definately have numbness, tingling, neuropathy, jerks and twitches, arthralgias......and the list goes on. So given all this do you think Lyme or Sarcoidosis? Do I stay on DOxy which seems to be helping or switch to the Marshall protocol? Hard decision. Your opinion on this would be appreciated. But I did see enough to feel compelled to just say thank you for sharing this, Scott.. and thank you to all who are contributing objectively to this discussion. Alot of value here.. Mo
If your D test results are accurate, and This doesn't mean that you won't have symptoms from an infection with Lyme (or something else) Since you do not have a diganosis yet, Barb
You are the first person I know of to report D1,25 test results on Lymenet since this Marshall protocol was suggested (maybe I missed other posts). It is interesting that you were normal, when it sounds like you would have been a good candidate for abnormal values. If you already have all these symptoms and the symptoms were caused by the inflammatory cascade, I don't understand why it matters 'how long' you have had it. Maybe Barb will explain more. Of course tests are always imperfect. I don't know if all the sarc people were abnormal or not. Maybe Scott can weigh in. I obviously don't have any suggestions, but thanks for posting.
I have had my ACE vaues taken in the past - And as a matter of interest, I came within a hare's breath of being diagnosed with Sarc, as I had the symptoms, high ANA, Sed rate, Uveitis...and sun sensitivity. I haven't seen any data on the D ratio from Lyme patients - anywhere - even in the literature. That data from Lymies would be interesting. It only makes sense to me that if people with lyme disease want to try the protocol that it would be best to follow the protocol that he put together, starting with the testing... The testing would be revealing, especially if it coincided with marshall's results and if it didn't that would also give pause and give valuable information as well...perhaps data that Marshall would find useful in his research with lyme. By posting the results it would help get a clearer picture of what is going on... By the way, insurance probably won't cover the tests unless you have osteo problems or bp problems...the tests run about 180-250 dollars. Byron
Any Dr. should know that if the D ratio is whacked - then osteopenia (OR worse osteoporosis) is the result because calcium is not utilized properly. If that's suspected, then insurance should cover it, if that's why the test is ordered. And that shouldnt make any diference as far as gender goes. Barb
Now, 6 were able to tolerate it (3 in high doses, 3 in low) and of those six, 3 improved, 3 totally cleared their granulomas on radiograph. IE all six who tolerated it got better. 2 had no change and one got worse. So the 3 who couldn't tolerate it, i.e. 33%, they got worse and the inflammatory Vitamin D hypothesis is probably correct in their case. But that's only 33%. A full 2/3 improved or went into remission using Vitamin D2 which should have been converted to the inflammatory form... Dr Marhsall states: Scadding's data confirms that not all patients exhibit the same sensitivity to Vitamin D and sunlight, and those which are less affected are closer to remission That doesn't make sense as an interpretation to me, as it sort of seems to be retrospective interpretation--as in, well the 3 who didn't get better were less affected by the hypervitamin D problem and they were less close to remission and so therefore they couln't tolerate d2? It seems that 6 patients improved or went into remission BECAUSE of supplementing with a form of Vitamin D, that is supposedly actively converted to the inflammatory form that is the KEY measurement of the inflammatory cascade and a key to symptoms. How does that confirm the theory? The data, admittedly small (9 patients) would seem to indicate that Vitamin D supplementation (calciferol) is beneficial in the majority--in 2/3! I don't get it. I figure I'll call Marshall myself in the next week or two only because I am equal parts intrigued and annoyed (intrigued by the fact he may be helping sarcoidosis, annoyed by the fact it's being proclaimed as a cure for lyme on this thread, before we know whether that is even partially true). But maybe someone can clear up my confusion beforehand. [This message has been edited by jen13 (edited 30 April 2004).]
Benicar has NOT helped them. Why? I am VERY open to ideas, and I know a few things about science myself. Just like the good ole' ICHT controversy, I need more beef. I think if I told one of these aforementioned Lymie friends that they should be cured by now they would take me to the river...and.... What the hell!! Peace, love and wellness, Julie-CA
I see Dr. C and am having to cancel my appt with him this month and re-schedule for July, so by then maybe he will more into this therapy. Again, I haven't said anything either, but, after 20 months of abx, rife, Samento, etc., and lot's of magnesium later, here I am, STILL in soooo much pain. For any relief in that area, I certainly appreciate it!!! Rosemary
What dose of Benicar are you taking? If you read (or contact T. Marshall) you will note that he states it doesn't work as a AI/II blockade when taken at the dose for blood pressure regulation... JEN13: I interpret the info from the 1949 paper (and what Marshall states as his interpretation) is that in some people the D ratio is below 2.0 (so therefore not disregulated) therefor in those people hyper vitaminosis D is probably not an issue. I think the people who have sun sensitivities know they do - and the ones that don't - know it also. The point here is this is a new test (the D ratio measurement) and a intriquing use of a BP medication. The Sarc abx trial is only about 100 people - so if you're looking for a ton of data - it's just not there. For in depth technical questions - anyone interested should just go ahead and post on It's not been tried in the Lyme community. Barb PS- I think I've said everyting I can say [This message has been edited by bpeck (edited 30 April 2004).]
Here's the info: Just wanted to thank you for shraing this with us, and please continue to do so. Also please keep us updated on how you doing too!
Therefore if in that pilot study 6 out of 9 could improve or go into remission by taking Vitamin D2, a precursor, then the whole situation is more complex than we think. In addition, there are no double blind studies. It could be that in most cases the low dose minocycline is sufficient, as in gulf war syndrome, they were given relatively low dose doxycycline in rounds of 6 weeks at a time, and most got well over time (were infected with mycoplasma). How crucial is benicar? Who knows yet? Not to say this line of research isn't very interesting and perhaps quite valid for sarcoidosis, but time will tell w/ lyme *if* people do get tested and we see what the range of D-hydroxy1 is and how people respond to reducing that etc. If D2 worked in those 6 patients, we have to figure out why.
I, for one, have been reading your posts here and on Eurolyme with interest!! I am very excited by this research, and I can only applaud your enthusiasm and need to inform others about it. I also understand others` skepticism!! We have all been through so much with this illness, and have usually been disbelieved by medical `professionals`, family and friends. We have alll also spent a lot of money in our search for wellness, usually with disappointing results. This does NOT mean, however, that we should vilify people like Scott who spend time and energy researching stuff that poeple like me can only hope to begin to understand!! I am also aware that Scott does not endorse or recommend products `willy-nilly`, and I am prepared to listen very carefully when he does recommend trying something. I know that Scott has talked to my doc here in the UK, and he is willing to look at the research and prescribe Benicar for his patients - I am looking forward to being a guinea pig. I am already taking Minocycline, although at much higher doses than Dr Marshall recommends. I just needed to ask a question that has so far not been answered yet - is Benicar OK for those of us who have proven low aldosterone? I have diagnosed low adrenal function, and need to take low dose hydrocortisone and fludrocortisone to help control this. Scott - keep it going and THANK YOU for all your hard work!! Jo.xx
I know I'm posting to the right group...I just get discouraged at times when I get the impression you don't have confidence in what I know. Skepticism is healthy and I encourage critical dialogue...I always have. But, this issue is one that I'm very confident in and wouldn't be so enthusiastic about otherwise. You say, "I just personally feel you are too all-or-nothing about this." That's exactly my point...this is the key to our problem...I'm trying to get that across to the group. I know those members without a strong medical and immunological background may have a difficult time understanding Dr. Marshall's discovery...I'm trying to alert this community that his discovery is historic...it is a major medical breakthrough! I'm not premature with my statements...I know that I'm correct and that Dr. Marshall's angiotensin discovery is the key to pathogenesis that we've been looking for. Then, his design of the ARB therapy using Benicar is the cure we've been looking for. I understand your cautious personality...we need your types to prevent passionate persons like myself from getting out of control :-) However, in this case...very little caution is warranted...the safety issues have already been investigated and the protocol used...it's time for action...it's time to slap the medical community upside the head...the are sleeping on this treasure! You say, "There is no magic silver bullet in a complex multifactorial chronic infection." I'm trying to tell you that there is a silver bullet for this disease...Dr. Marshall has discovered it! Scott
I haven't tested my D ratios...I would have used Benicar even if they were within normal range, simply because I'm not confident that the tests are always accurate and that I know I have an inflammatory disease caused by this. The response to therapy is a test I have more confidence with than any....I guess I've lived in the "Show Me State", long enough to have this sink in....ie, the proof is in the pudding! So, IMO, the clinical response to Benicar therapy is an important test...as is the response to abx therapy. Scott
I disagree with you but I really don't mind the dialogue. You've gotten me interested enough to research it and call Marshall and maybe Moskowitz (is that the other guy's name) myself. I would still if I were you be cautious about your statements. You can get people excited without proclaiming a cure after, as Thomas Parkman cogently points out, 4 days. You are putting your reputation on the line in a way, that isn't necessary. Luckily I've finished a bunch of deadlines and although that means it's time to start up my ozone protocol again, this research has actually had a beneficial side effect for me, in reminding me/convincing me that I can do a version of "low dose pulsing" of ozone. I overdid ozone when I first got the sauna, in a mad fit of "KILL THE BUG!" and after 6 straight days of sauna I was utterly wiped out. Slow and steady wins the race. I wish you wouldn't keep proclaiming a cure. It's not that I don't "trust" you or have "confidence" in your knowledge base. Even very intelligent scientists who spend their life researching stuff can have incredible inherent biases that lead them astray. I am not questioning you as a person, only your claims. I only wish it were so, but it is just not that simple. The history in the lyme community proves it. When flagyl was first used, everybody claimed it the missing link--the cyst buster! (Personally I think it inhibits flagellin movement, and is a reason its good in trichomonas too...nobody ever proved it busts cysts). Then questran. Then heparin. Etc etc. All have proved somewhat useful. Maybe benicar will be the same. We'll see.
Scott If your D test results are accurate, and This doesn't mean that you won't have symptoms from an infection with Lyme (or something else) Since you do not have a diganosis yet, Barb
Don't compare apples to oranges...just because they are taking Benicar for hypertension doesn't mean it's the proper dose for borreliosis. The dose of Benicar for hypertension is too low to cause complete AR blockade...you must use higher doses to cause complete AR blockade...and you need to be taking the right abx too. Scott Benicar has NOT helped them. Why? I am VERY open to ideas, and I know a few things about science myself. Just like the good ole' ICHT controversy, I need more beef. I think if I told one of these aforementioned Lymie friends that they should be cured by now they would take me to the river...and.... What the hell!! Peace, love and wellness,
I have had what they finally found to be Lyme disease since 1993. This was only diagnosed last fall, and since then I have been on various high dose antibiotics, with some reduction in symptoms. I am interested in the MP because severe inflammation is one of my most longstanding symptoms, and I am unable to tolerate NSAIDS or any rx antiinflammatories. I have a few questions about implementing it with Lyme. I've printed much of the papers for my doctor, and hope he is reading them. Whe I go in for my next appt. I hope to talk about doing the testing. I am currently taking 600mg daily of Omnicef with fairly low level of herxing. Will being on this antibiotic affect baseline tests for the protocol? If I have been on antibiotics for 8 months (doxycycline, zithromax, and omnicef) will that affect my test results? If I am already getting benefit from Omnicef, should I continue it? I know it is not one of the drugs you use, but it does seem to be helping. Borrelia Burgdorferi have been found in the brain and central nervous system of Lyme patients. I've been told it takes certain drugs and certain blood levels of those drugs to penetrate the blood brain barrier. Does Minocycline penetrate at the levels used in this protocol? Can other drugs be used at the same time as the MP? For example, babesia requires antiparasitic drugs, bartonella seems to require levaquin or rifampin, etc. It's very common for Lyme patients to have multiple coinfections. Can these be treated simultaneously, or would they need to be handled seperately? Lots of questions, I know. I'm trying to learn as much as I can from your papers, but since they do not directly addres Lyme and coinfections, I hope you don't mind. If this protocol could help even a small number of Lyme sufferers, it would be a blessing.
I'm glad you'll be investigating this further. I maintain my confidence in it. I am sticking my neck out on purpose. Dr. Marshall's wonderful discovery has not been getting the recognition that it deserves. I think it is terrible that this knowledge has been out there for this long and the Lyme community hasn't caught on to it yet. I'm trying my best to make sure this changes. I appreciate your dialogue...I promise to simmer down a little now...I think I've got folks attention. However, I still think this is the cause and the cure we've been looking for and I'm standing by that! Sincerely, Scott
Scott, http://flash.lymenet.org/ubb/Forum1/HTML/024732.html This seems paradoxical to me, but I've often found that the appearance of paradoxes can often be superficial and misleading. That's what a paradox really is, an "apparent contradiction" when there is usually a hidden explanation which can resolve the apparent conflict. Can you help us figure out this discrepancy or give us any insights or clues about it? I'm bewildered. I'll confess that I haven't mastered any of these concepts pertaining to Vit D yet. I've been too busy trying to play catch up with all the new concepts about immune suppression and MMPs and TLRs, etc. That's why I'm feeling embarrassed to pester you for an explanation of the pros and cons of Vit D now, but I also don't want to let the opportunity pass for doing so. It seems timely to insert these related(?) ideas into this discussion now, before the discussion progresses too much further.
Please post on Sarcinfo or call Trevor for details.. here's a TON of techincal data on his site. He's on to something.. And yes he can be sharp - (but when you answer 100 emails a day - I'll cut the guy a little slack). As I just said on another thread - I Barb
while having a barium upper GI...a radiologist remoarked on 'cyst' like granulomas in my lungs....hmmmmmmmmmm when 15 and in track...we all came down with a NASTY bronchitis...everyone else ran to the Doc...I choose NOT to, I eventually did and never recovered until the following summer....since then I have had night sweats, etc.....I have cysts in my neck along the sping and lymphomas...everywhere. I have ALWAYS felt better AFTER THE SUN GOES DOWN. I also will get naseau on occasion, and will get a 'panicky...tight' feeling in my chest when initially meeting a sunny day. My optic nerve swells also...causing a cascade of other thinhgs to happen. I can also 'handle' certain things (sensitivities) better on dark days....the warmer the better. I am fascinated by the similarities here. Scott.......we will talk. Kent ------------------ But, what fascinates me here the fact that have also had an inornate amount of fractures compared to others....35 by the age of 35. This is REALLY cpaturing my attention....ADD included. Kent I don't have electronic access to the full text article you've cited, so I haven't read the material and methods. The abstract refers to the levels of vitamin D without specifying whether they measured the active form or the inactive precursor. In so far as I understand this issue, you can't say whether someone has hypOvitaminosis D or hypERvitaminosis D unless you measure the active form. It's also my understanding that the standard assay measures the inactive precursor. When the standard vitamin D assay (for the inactive precursor) is performed on sarcoidosis patients their level is sometimes found to be low. But they are low in the inactive precursor form because it's being converted too rapidly to the active form. So the test suggests that they have hypOvitaminosis D when really they are experiencing hypERvitaminosis D. Supplementing with vitamin D, or exposure to sunlight, results in the rapid conversion of the inactive precursor to the active form thereby excacerbating the problem. Or so this is my understanding of it. The paradox only arises when 25(D) levels and the 1,25(D) levels are not reported. I initiated a vitamin D experiment on a CFS/FM forum a while ago. A couple of people were quite positive about the results initially but I don't think they ever gave an update. The problem is that, according to Dr. Marshall, hypervitaminosis D may have an addictive quality to it and under some cirumstances a bolus of vitamin D may result in temporary euphoria. It's been suggested here by others that supplementing with vitamin D may be beneficial. There's no harm in trying this out so long as you know what the hypervitaminosis D symptoms are ahead of time and will be aware of them should it become an issue. P.S. At least one person on the CFS/FM forum said that vitamin D did nothing for them. A consensus was never reached. [This message has been edited by phage (edited 01 May 2004).]
Shark fishing with the bait in your hand? Walking the wrong way on a roller-coaster? Scott....SIMMA DOWN! OK??? Everybody ok? The people I know on Benicar, albiet doses for hypertension, are taking Mino, along with Tinidazole and Biaxin. I myself took 400 mgs. Mino for five months along with Tinidazole and Biaxin (pulsing) and nothing happened...in fact, I got much worse. I feel as if half of my mind is gone...and the head pressure thing along with the Tinnitus is unbearable. Yes, I will give the Benicar a try, perhaps along with Biaxin XL and Mino. SUNLIGHT depletes the immune system...in fact several years back Scientific American ran this topic for it's cover story. This is the reason one gets skin cancer, etc. It stands to reason that someone with a chronic infection will NOT benefit from the sun; however, one may feel better emotionally from simply being in the sunlight and getting some stimulation of the hypothalamus through the eyes. A balancing act for sure. Now, apples and oranges? Sure, I'll have some, thank you very much. I've got nothing else to do...perhaps put them both in a blender... Question...how many of the people who felt better taking Benicar had hypertension, and could the simple act of lowering their blood pressure be the reason they think the protocol works? Has anyone done Lyme testing Another thought: NO ONE knows enough about Borrelia at this time to state that inflamation is the ONLY reason we are sick. Perhaps those of us going to use this protocol should do so, so we can show something that the "powers to be" can understand. [This message has been edited by JRWagner (edited 02 May 2004).]
TroutScout, Personally, I'm still considering another "disease model" for the typical, average chronic Lyme patient....if indeed there is such a thing as a typical, average LD patient, that is. So, I'm somewhat skeptical about how well this particular therapy program will fit for all LD patients. I also suspect that sarcoidosis probably has an infectious trigger, probably with a "mutant pathogen" or a cell wall divergent pathogen, or maybe a mycoplasma or a mycobacterium. If so, then Marshall's therapy might work well for that sub-group of patients. Whether the same therapy protocol will work equally well for all late-stage Lymies, who have probably acquired various co-infections along the way (either tick-borne or community-acquired), I have my doubts. I'm cautiously optimistic, but I'm not excitedly enthusiastic about it at this point in time. "The proof of the pudding is in the eating." If enough others benefit from it decidedly, then I'll start to get a little bit more excited about it. For the time being, I'm just glad to have a chance to start learning about it. That's why I appreciate so much everything that everyone else is contributing here to this discussion, both pro and con. ahem. The part of this discussion that we are overlooking is the fact that our immune systems, in this argument, are assumed to be capable of dealing with this infection. I really don't think so. When I was bitten I got nailed immediately...where was my immune syatem then? I was VERY healthy, I never got sick, and had a brain, a stable brain at that. This bacteria has the ability to "go stealth" so how is our immune system supposed to deal with this fact? What about the cyst forms? Our immune system surely can't deal with this, whether we are 100% or 20%. Even the addition of strong Abx is not enough in many cases...so modulating the immune/inflamatory response can't effect something that is not, in itself(our immune system) able to deal with the invader... Sounds like a good sci-fi movie plot. LYMIES FROM HELL!!!!!!!! As for metals...I have a mouth full...I am going to cash them in. People seem to ignore informed people like DocDave, a Dentist, who has handled amalgam for 20 years and has been tested and...guess what??? No high Mercury levels... I have very low levels as well...I was never sick BEFORE Lyme...and I sure do not believe removing these fillings, replacing the larger ones with something that is NOT as strong, possibly getting bacteria in m,y bloodstream, etc. will have any effect other than a placebo one...OH...I am suppossed to feel better...then, yes, I do!!!! I have many dentist friends who have been tested, as well as my mother who ran a dental office for 30 years...all low,if detected at all...mercury levels...and, yes, the tests were the proper ones...these people are professionals. This bacteria is NOT like any other. It has the most complicated genome of them all. It is smart, changes shape and type, hides INSIDE cells, etc. NO ONE has proven the existance of neurotoxins secreted by Borrelia. All this detox stuff is touchy feely nice, but the overwhelming majority is pure bunk science. I truly hope Benicar helps...but as far as enabling my immune system to do it's job...if it could have...it would have when I was first bitten. There are just too many mechanisms at play with this bacteria...but, as I AM open...I will give it a shot. It is better than jumping into the river. Peace, love and wellness, I'm wavering between excited enthusiasm and cautious optimism regarding this new approach. I must admit that it does fit quite well with the teachings of Dr. Thomas McPherson Brown, who stressed the importance of controlling the inflammatory response so that the antibiotics could penetrate tissues better. In his day, Dr. Brown used ultra low dose cortizone for this purpose, so my guess is that if he were still alive today, that he too would embrace this new therapy protocol. This concept also fits with the idea of the active form of Vit D as being a steroidal hormone, since it's known that the steroidal hormones (such as cortisol) are out of whack in both CFIDS and chronic LD. So, maybe there's a connection here, too. I'm still wrestling with the role of the co-infections though. I tend to think of Bartonella as being secondary and opportunistic, so perhaps by controlling Bb more adequately via Benicar, then the host's immune system could manage to control Bartonella without the necessity of resorting to heavy-duty antibiotics for it. Afterall, the only folks who have trouble with Bartonella are the immuno-suppressed, according to the medical literature. That still leaves the problem of Babesia to be dealt with. I'm hesitant to say what my ideas are about it right now, but I'm inclined to think that Babesia will still require separate treatment. Needless to say, the Ehrlichias would be taken care of by the minocycline, so that shouldn't be of much concern, of course. I'm really eager to see if our LLMD will be ahead of us on this topic by the next time we see him. If the ILADS doctors have already been given a "heads up" alert about it by Free2Reckon, then I'm curious if our LLMD will bring it up himself, or if we will have to initiate the discussion ourselves. I have a hunch our LLMD is going to be enthusiastic about it because he keeps saying that it's the cytokines which are wrecking all the havoc, which is another way of saying that it's the inflammatory response which is the major hindrance to recovery. I'm also eager to hear what some of the other leading LLMDs think about it, too, after they have had a chance to consider it. Again, thanks to everyone who has participated in this discussion, including those who have played Devil's Advocate. There is a part of me deep inside that is afraid to get my hopes up again for fear of another disappointment, but there is another part of me that senses that this might be an important missing piece of the puzzle. Again, thanks to Phage for helping me resolve the paradox about hyper- vs. hypo-vitaminosis D, depending upon how the lab measurements are done. I'm sure you've nailed it.
The last 4 night I have slept so well... IMO, this alone is reason enough to use Benicar therapy. Scott
The last 4 night I have slept so well... IMO, this alone is reason enough to use Benicar therapy. Scott AMEN to that!!! I can hardly wait til Thursday when I purpose this to my PCP. So far, he's been open to anything we have tried, and, we have tried quite a lot. It's too long to wait for my appt. with my LLMD, Dr. C of MO. I have to do this now!!! or yesterday!!! Rosemary
I have been following with great interest Scott's threads about the Marshall protocol using Benicair, an angiotensinII receptor blockade (ARB) and low-dose minocycline. It's interesting, although I can barely muddle through with a real understanding (yikes!)... and this site explains the use of ARBs in treating hypertension, (being the drug company site). They say that..."The renin-angiotensin-aldosterone system (RAAS) is largely responsible for maintaining the body's fluid homeostasis. Operating around a genetically determined "set point" in each individual...When an individual's circulatory system is no longer operating around its physiologic set point (ie, in a healthy balance), it is usually because there is fluid overload and/or excessive vasoconstriction.... Questions: If a Lyme patient (like my son) has cerebral hypoperfusion, is this type of "vasoconstriction" subject to the effects of an ARB? Or is it only if it caused by fluid overload? He has problems With LOW blood volume and LOW aldosterone and LOW blood pressure...not high. Or, are there other mechanisms of ARBs, Benicair, that are responsible for stopping the inflammatory cascade in Lyme and other infectious disease patients? I'm just not understanding this aspect of its use.... Thanks,
Scott when I took glutamine I also felt great for a few days after not pains, no depression, no anxiety. Everything was gone only to come back 3 days later and come back stronger. If I continued with glutamine I am not sure what would have happened next. Now, does Benicar have any anti-inflammatory properties? If it does maybe that is helping you. What data do you have that once you stop the therapy you are not going to be hit by a ``train'' full of Bb? I support your plan. I just want to feel more comfortable
If I missed this in an earlier post, I apologize. Thanks! The last 4 night I have slept so well... IMO, this alone is reason enough to use Benicar therapy. Scott
Also, if you read the Road Back Foundation's reasoning for the low dosing or pulsing of the abx, it fits right in with Trevor's reasoning. He says it's a big mistake to take abx every day. Alternating days, somehow, prevents the bugs from going into hiding? penny
penny
Understand that the manufacturers of ARBs may not appreciate the anti-inflammatory value of their own products yet...if they do, they may only be beginning the research necessary for them to market it for such a therapy. Their public information won't cover Dr. Marshall's work...it's too contemporary. Questions: If a Lyme patient (like my son) has cerebral hypoperfusion, is this type of "vasoconstriction" subject to the effects of an ARB? Or is it only if it caused by fluid overload? A: The good news about the ARBs is that the do seem to help with this type of hypoperfusion ...it helps to dilate peripheral circulation...this is something many of us suffer with. Benicar has helped my mental clarity significantly...it also seemed to help my peripheral ciruclation in my hands. A: High dose of Benicar is still well tolerated in these cases according to Dr. Marshall's work...it won't aggravate this condition significantly. Q: ...are there other mechanisms of ARBs, Benicair, that are responsible for stopping the inflammatory cascade in Lyme and other infectious disease patients? A: Yes...the angiotensin II inflammatory cascade can be involved with many diseases, not just borreliosis. Scott
"Over the last month or so I have started to understand that Benicar is actually part of the antibiotic process." and... "Benicar actually seems to deprive the bacteria of peptides they need to protect themselves against the immune system. I will have a full review paper explaining that statement finished in a few days." Scott, what I'm wondering is if you think that Benicar may also be playing some role as an anticoagulant (since these angiotensin II receptor blockers somehow are said to affect the fluid balance in the body). Most people with infections have hypercoagulation disorders, making the blood "sticky" and slow to deliver antibiotics. Any thoughts? penny
"---> Be creative - Herxheimer is your friend - you have to kill all the gram-negative bacteria" But he also says to reduce the dosage of the minocin, to keep the herxing to a minimum, increasing the dosage only as you can handle it. Once the bacterial load is significantly reduced, then more abx are added to the program. penny
A: This doesn't appear to happen ...especially with the bacteriostatic abx such as the tetracyclines, macrolides, lincosamides, and cotrimoxazole. Q: ...wouldn't this Benicar protocol have the same problems as a steroid protocol? We all know that Lymies who are given steroids (immunosuppressants) can become MUCH MUCH worse. I think Scott has tried to explain it to me before, but I haven't fully grasped how this Benicar does not suppress the immune system. A: It's correct that Benicar does not suppress the immune system...it actually enhances its ability to deal with the infections. This is a major advantage of this anti-inflammatory regimen vs steroid therapy. Scott
All of my symptoms have improved...too numerous to mention here...many neuro symptoms and fibro...arthalgia...etc. Scott
Regarding abx, please remember my study on pathogenesis and how bacterial lipoproteins are involved with triggering this disease. Please note that the abx used in this protocol are all bacterial protein synthesis inhibitors...ie, they block the pathogens ability to produce the disease triggering BLPs. Scott
Trevor has more information on the benefits of Benicar than he has not published yet...I can't disclose more than that...we'll have to wait until he does. Again...remember the abx and the BLPs too...also Benicar helps the immune system kill the infection...focus on that now until Dr. Marshall discloses more. Scott [This message has been edited by free2reckon (edited 02 May 2004).]
That is interesting. Scott, is this something you've talked to him about?
I have not yet received a response from him. I thought if other parents sent him faxes asking about Benicar he might be more inclined to look into it. Thanks for your help with this. Marie
Thank you for all you've done. I'm very interested in this and am glad you've already contacted Dr C. That makes it real easy for me!! I do have concerns that I might not be able to take the Benicar, but that's a personal concern, and I'd still be very delighted if this works for most people here on Lymenet! I take atenolol for tachycardia, and have low aldosterone and low BP [mostly due to the atenolol, I think] but it sounds like Benicar may be a possibility for me. I'm certainly willing to give it a try. Thanks for all you've done to bring this to our attention. ------------------ It appears that Marshalls protocol calls for working up to taking 120 mg a day... Was that Marshalls recommendation for lyme patients as well? Or are there other criteria he is using such as testing, symptomatic improvement? It sounds like from what you shared that there is more info...to be released by Marshall...does this info affect the use of the protocol Scott? Also, am still wondering if the whole protocol should be followed..seems thats where he got the results, ie, testing, ramping up of drugs, avoiding sunlight,removing vitamine D from diet... Or is Dr. Marshall recommending a less stringent protocol for lyme...seems like what you are doing is limited to just the benicar and Mino... Thanks,
I've also been in conversation with Marshall about his protocol. He has told me that the protocol is exactly the same for Lyme as it is for sarcoidosis. He considers borrelia B to be one of the infecting organisms in some sarcoidosis patients. His protocol is designed to hit multiple organisms, though I still haven't been able to get anything out of him about babesia. The phase one protocol is what he recommended, following it for a minimum of three months, then adding in other abx gradually in phase two. This is all to be done under the supervision of your own doctor, but Marshall is willing to give feedback on your test results and response to treatment. I was very interested by his description of why you need to protect your eyes from light. Apparently the eyes more quickly produce the 1,25-D hormone, and have a harder time losing it. the excess hormone is part of the inflammatory cascade. He feels this stimulates many of the neurological symptoms, as the eyes connect directly to the brain. This is paraphrased from some of his comments, but it's what I understood. I figure it's worth a try.
I have a very real question about how one who is already taking several antibiotics, to deal with co-infections begins this protocol. I am not sure I would want to stop everything and start over. Maybe it would be better in the long run, to do this but it does concern me. There are alot of unknowns here, and while there is some good information online, I still have not come across that peice of information that would make me jump up and start ths protocol tomorrow. I will discuss with my LLMD in a couple of weeks as well as a couple of other doctors. I am seeing one of those doctors this week, I will be real interested in what he has to say about it. I am keeping an open mind, but the reality is if this was such a slam dunk, I am sure we would have heard alot more about this protocol to date. That is not to say in the future this protocol wont be the end all, for our sake I hope it is, because I don't know how much more of this disease I can take.
So,according to Dr. Marshall, lyme would be handled the same way and to follow his protocol... I would be curious to know how he deals with people that have viral infections... Echo virus and herpes infection, hlv6,9, coxsakie, ect..are all common as co-infection in lyme...and I believe I read that benicar may be counterindicated with viruses... any feed-back concerning Marshall's info on this appreciated... Byron
It doesn't make a lot of sense to follow the exact same protocol unless someone has the d-25 problem...otherwise why stay out of the sunlight? Sunlight really helps me and always has. It's the cold grey winter that is a problem for me. ALso, in reading some of the threads on the sarcinfo website (there are a ton so I read kind of randomly) I found one where people were posting their ratios, and there was a wide range. Some were really rather normal, in reference ranges and ratios. An occasional person was WAY off the charts. I'm not sure, were one to really analyze the data, if there wouldn't be a bellcurve range among sarc patients--just the way those 9 patients, 6 of them got better with Vitamin D2 as a precursor (which as I said, I have questions about). I cannot figure out what that means, except maybe adding in a different form of Vitamin D helps quiet the inflammatory form. Vitamin D is very important--unless a person has the inflammatory metabolite, staying out of the sun adn avoiding Vitamin D could be harmful to health. He likes minocycline plus zithromax... THe low dose appeals to my basic viewpoint, which is that some people in lymeland, WAY overdo the antibiotics, as if their bodies could really handle all that toxicity so easily... I don't see why I can't apply the ozone protocol instead of antibioitcs and it will get rid of fungi as well...so I am mostly interested in this in a theoretical way. I'd like to know the answer too to Byron's question about viruses, since someone pointed out they react the opposite to benicar...can be stimulated. Another question I have, which is probably not answered due to my lack of thoroughly researching this...the idea with sarc is that you are genetically predisposed to react with an inflammatory cascade to certain microbes. Now, once you run into one of those microbes, and start forming granulomas, you have a place in the body where microbes can flourish. Then any microbe you run into, at least some of them will be able to hide in and flourish in the granulomas, leading to a multiple-microbe infection. This seems to be his reasoning. And the benicar, by stopping inflammation and d-25, allows the body to start working again and somehow dissolve the granuloma? I'm still a little unclear on this, but apparently the granuloma is key. So, nobody knows in lyme how important the inflammatory cascade is, to perpetuating the illness. Scott is saying its the missing link, but I'm not so sure myself. For instance, lyme changes its outer antigens, fooling the immune system constantly, while keeping the main 6 antigens hidden. That's one way it evades being eliminated thoroughly. It also hides in cells where obviously it's harder to reach. IT also goes into dormant forms, cysts and granules, that are hard to kill. I haven't seen an explanation of how intracellular microbes (which he clearly is aware of and includes) are somehow benefitted by benicar in a person with lyme who does not have eleveated d-25, and does not have granulomas. That's why the comment about the peptides interested me. I have seen some research on fungi for instance that is entirely experimental but shows that if you can inhibit certain enzymes they use, antifungal drugs become incredibly more effective. Perhaps there is a mechanism by which benicar is helpful that has nothing to do with d-25. IMHO lyme is probably a lot tougher than sarc. Docs who wade into the lyme arena with new ideas are often surprised over time how varied and recalcitrant it can be.
A: I started directly on the higher dose...but keep in mind, I'm already in pretty good shape before I started, so I would caution anyone not to do it my way unless they are already in good recovery of lightly infected. Those that are seriously involved need to be cautious with Benicar...not due to the BP effect but because of the strong immuno-modulatory effect. Q: Was that Marshalls recommendation for lyme patients as well? Or are there other criteria he is using such as testing, symptomatic improvement? A: His recommendations are basically the same for borreliosis as they are for sarcoidosis...remember these are often one in the same. Q: It sounds like from what you shared that there is more info...to be released by Marshall...does this info affect the use of the protocol Scott? A: No, not the protocol...the new info he's going to publish regarding Benicar is involves more detail in the action of Benicar in these infections. Q: Also, am still wondering if the whole protocol should be followed..seems thats where he got the results, ie, testing, ramping up of drugs, avoiding sunlight,removing vitamine D from diet... A: Not a bad idea...but I'm not sensitive to sunlight and with Benicar giving me A-II blockade, I probably don't have to be as strict. Q: ...Or is Dr. Marshall recommending a less stringent protocol for lyme...seems like what you are doing is limited to just the benicar and Mino... A:...he's recommending the same protocol...I've just concentrated on the major factors which are the Benicar and the abx. But, please remember...I'm lightly infected at this point and after 7 days on Benicar having very few symptoms. Other more seriously infected must be addressed differently. Scott A: This is where caution is prudent...please note that Benicar is a potent immuno-modulator and can dramatically improve the way your body can kill pathogens, especially in the presence of abx...if you are a severe case and are taking large doses of abx and then add Benicar you could be taking the risk of a severe and dangerous herx reaction. If you are a severe case, it would be prudent to go off of abx and let the doses clear your system before beginning Marshall's protocol. Extinguish the inflammation and get the immune system working first...then gradually bring in the abx. This is a much safer approach and will prevent unwanted reactions. Scott could you describe other than the Benicar and minocycline, what things you are taking - other med's, supplements etc...? also, what were your symptoms prior to adding the Benicar? thanks "if you are a severe case and are taking large doses of abx and then add Benicar you could be taking the risk of a severe and dangerous herx reaction" Originally you were saying that the symptoms of lyme were due to inflammation/BLP's that benicar could modify. These symptoms/inflammation *WERE* the disease, in a sense. We can live peacably with microbes that don't generate these, apparently. I am confused about how that insight, which would tend to indicate that benicar ameloriates a herx or symptoms, aligns with the idea that benicar is not only a potent anti inflammatory but improves the functioning of the immune system to the point where more microbes will die and there will be a worse herx. Much about this still seems contradictory to me, or I don't understand it well enough: the d-25 ratios vary widely even in sarc; the response to precursors like Vitamin D2 varies and in 65% of the cases in that pilot study, improved or went into remission with Vitamin D2 as a precursor, confusing me about the D-25 idea as a key and reliable marker in all sarc cases and maybe some lyme; the benicar either quenches inflammation and BLP's or it doesn't...if the former, a herx should be ameliorated as with enbrel or the stuff Marnie's sister is on (forget the name)... It still does not present a clear picture to me.
I apologize for making this confusing...I'm trying to keep it as simple as possible for folks to understand. We need to understand the significant immunodysfunction that this disease causes during the inflammatory cascade. Once this cascade is corrected the immune system can unleash a potent response, killing a lot of pathogens and producing severe herx reactions...especially in the presence of abx. This is why Marshall's approach makes sense...start by correcting the immune system first and then add the abx. Now, I was able to tolerate both at the same time...but remember I was fairly well on the road to recovery. Others severely involved will have different experiences than mine. However, I'm confident that Marshall's protocol will provide significant improvement in many if not all Lyme suffers, and that this improvement will occur faster than with conventional Lyme therapy. Scott [This message has been edited by free2reckon (edited 03 May 2004).]
Email me and I'll send a report. Scott
A: This doesn't appear to happen ...especially with the bacteriostatic abx such as the tetracyclines, macrolides, lincosamides, and cotrimoxazole." Not true. The cyst forms are "antibiotic resistant". It is far, far harder to knock those out. The following abstract indicates that in a NUTRIENT DEFICIENT medium, when given abx., Bb goes into a cyst form. Less with the tets, but I don't want ANY to go hide out. Do you? Rocephin causes cyst formation of Bb Cystic forms of Borrelia burgdorferi sensu lato: induction, development, and the role of RpoS. It has been demonstrated recently that cells of Borrelia burgdorferi sensu lato, the etiological agent of Lyme disease, transform from mobile spirochetes into nonmotile cystic forms in the presence of certain unfavourable conditions, and that cystic forms are able to reconvert to vegetative spirochetes in vitro and in vivo. The purpose of this study was to investigate the kinetics of conversion of borreliae to cysts in different stress conditions such as ***starvation media*** or the presence of different antibiotics. Using the same experimental conditions we also investigated the possible role in cyst formation of RpoS, an alternative sigma factor that controls a regulon in response to starvation and transition to stationary phase. We observed that beta-lactams penicillin G and ceftriaxone, the antibiotics of choice in Lyme borreliosis treatment, favoured the production of cysts ***when used with serum-depleted BSK medium.*** In contrast, we observed a low level of cyst formation in the presence of macrolides and tetracyclines. In order to elucidate the role of the rpoS gene in cyst formation we analyzed the reaction of the rpoS mutant strain in comparison with its wild-type in different conditions. Under the same stimuli, both the wild-type borrelia and the rpoS knock-out isogenic strain produced cystic forms with similar kinetics, thus excluding the participation of the gene in this phenomenon. Our findings suggest that cyst formation is mainly due to a physical-chemical rearrangement of the outer membrane of Borrelia burgdorferi sensu lato leading to membrane fusion and controlled by different regulation mechanisms." The ROOT of the problem is that our level of Mg (as evidenced by the Romanian abstract) SEVERELY depleted our Mg levels. SEVERELY. The abx, Rife therapy (frequencies), heat, acids, Toxins - all have a neg. charge. The body, to maintain the pH balance, WILL pull additional minerals out of storage to compensate. Furthermore, Ca and Mg are needed by our own immune system to form HEALTHY antibodies. On top of this...Bb uses Mg in its own enzyme reactions (according to microbiologist Dr. Gary Kaiser). More documentation: Characterization of the physiological requirements for the bactericidal effects of a monoclonal antibody to OspB of Borrelia burgdorferi by confocal microscopy. Supplementation of Ca2(+)- and Mg2(+)-free medium with these cations restored the bactericidal effects of Fab-CB2. The mechanism by which a Fab fragment of an antibody destroys a bacterium directly may represent a novel form of antibody-organism interaction. PMID: 9125579 Without enough Mg, our own antibodies are "unhealthy" (Fab portion) and this is one of the reasons (there are many) that TNF alpha steps in. TNF alpha helps to get rid of unhealthy antibodies. Once again, it is a SEVERE depletion of magnesium that is the root of the problem and this absolutely spirals out of control. The "side effects" of Humira ($$$ shots) are TB and cancer. Humira is given to COMPLETELY block TNF alpha. You may indeed FEEL better, but watch out.
penny
I have a very real question about how one who is already taking several antibiotics, to deal with co-infections begins this protocol. I am not sure I would want to stop everything and start over. I agree. I've been trying to ask Marshall about this, but he tends to sidestep that question. My particular concern is babesia. It sounds to me as though someone on high dose, multiple abx would have a severe herx when starting benicar. Marshall does say the 1,25-D levels have some predictive value for how extreme the herx might be, but it would still make me very cautious. I think if you are improving on your current protocol, there is not much reason to look at this. I'm currently only on one abx, omnicef. Usually omnicef is used with a macrolide, but I couldn't tolerate them at the recommended doses. I'm a little concerned because I know without the macrolide, omnicef is likely to encourage cyst formation. This is part of why I am looking into this new protocol. But I agree with you, there are a lot of unanswered questions, and I don't think anyone should step into it blindly or casually.
Byron, I don't know much about how Marshall handles viruses. I have seen in one of his papers that fungal and viral infections, cancer, and AIDS can all be reasons that someone's 1,25-D tests would come back low. These switch the immune system over to Th2 dominance. In that case, I imagine the protocol might have to be changed, but I haven't seen anything as to how. You might want to ask him some of these questions yourself. he seems pretty open, though he doesn't always reply to the exact question you ask. He is only one guy, answering all the questions for free. Plus, if we flood his board, he might get less cooperative. So I recommend reading his papers first, so you know what to ask. [This message has been edited by riversinger (edited 03 May 2004).]
I agree. I think if people consider following this protocol, they should get the testing done. That way, we would find out if some, most, or no Lyme patients have elevated 1,25-D. I decided to experiment with the reduction of sun in my eyes because of what Marshal told me about its effect on neuro symptoms. I figured a week won't hurt me, and once I get the tests, I'd have a better idea as to whether it is an issue for me. But I definitely wouldn't restrict dietary intake, or restrict sun exposure for an extended time, unless it was clear the 1,25-D was high.
Scott, A difficult question, as Sarc patients generally have not reported orthostatic intolerance. Cardiac manifestations are frequent, but tend to be due to changes in the 1,25-D level due to light exposure or food ingestion. Particularly as a result Vit D supplements or taking vitamin pills. There hasn't been a lot of discussion yet about the importance of 1,25-D to chronic Lyme patients, but it is not only responsible for the production of the inflammatory macrophages, but also for facilitating or blocking the entry of pathogens into the cells. There is a section in our new paper about that (still a week or so away from completion, I am afraid) Benicar has potent anti-fibrotic properties, and it certainly tends to block bacterial protein/peptide production. ..Trevor.. The peptide stuff has my ear Here is an article from PubMed. Keep in mind all science posted on PubMed is not good science and severe conclusions shouldn't be drawn from just an abstract, BUT, DAMN! JAMA. 1998 Feb 18;279(7):532-4. � Bosch X. Internal Medicine Unit, Hospital Casa Maternitat, Corporacio Sanitaria Clinic, Barcelona, Spain. CONTEXT: The extrarenal synthesis of active vitamin D sterols has a central causative role in the hypercalcemia associated with various granulomatous diseases. OBJECTIVE: To study the calcium metabolism in patients with cat-scratch disease who have hypercalcemia. DESIGN: Case report. SETTING: University hospital in Barcelona, Spain. PATIENTS: Two identical twins who developed asymptomatic hypercalcemia during the acute phase of cat-scratch disease. MAIN OUTCOME MEASURES: Serial measures of calcium homeostasis and metabolism over a 2-month period. RESULTS: On admission and 6 and 7 days later, both patients were found to have increased levels of serum and urinary calcium, serum phosphate, and serum 1,25-dihydroxyvitamin D [1,25(OH)2D], whereas they had normal values of serum 25-hydroxyvitamin D and urinary cyclic adenosine monophosphate and decreased serum concentrations of intact parathyroid hormone. Sixteen and 20 days after admission, these abnormalities had resolved without treatment. A direct correlation was observed between the serum 1,25(OH)2D levels and both the serum and 24-hour urinary calcium concentrations. Also, the concentrations of calcium and 1,25(OH)2D paralleled the clinical activity of the infectious disease over the period these parameters were measured. CONCLUSIONS: Our cases provide evidence that cat-scratch disease can produce hypercalcemia through the unregulated production of the metabolite 1,25(OH)2D. Cat-scratch disease should be added to the list of granuloma-forming diseases that are responsible for 1,25(OH)2D-mediated hypercalcemia. Publication Types: PMID: 9480364 [PubMed - indexed for MEDLINE] JAMA-Journal of American Medial Association Cat Scratch Disease- BARTONELLA! -Lyme Wolf
In addition, Ca and Mg are needed to fight Cancer, a virus... Antibody Dependent Killer (K) and Natural Killer (NK) cells (ASCC) kill by extracellular cytotoxicity by binding to a target cell and secreting cytolysins which unidirectionally kill the target cell. Once the target is bound by an NKAR and no NKIR is activated, the cytotoxic reaction occurs. The interaction of cell adhesion molecules between NK and the target cell may tighten the attachment. The first step is a MAGNESIUM DEPENDENT movement of the cytoplasmix organelles (Golgi and granules) of the NK cell to face the target cell. The secretion of the granule contents into the intercellular space is a CALCIUM DEPENDENT step that results in the preferential insertion of perforin pores into the target cell membrane." The above link does not work anymore. However, since these are ``course notes'', I will assume this is ``common knowledge'' at the college level for those studying microbiology/immunology. It seems there must be magnesium AND calcium present for the NK cells to do their job.
"Author: Admin (---.vnnyca.adelphia.net) Magnesium and Calcium are un-important until you get your 1,25-dihydroxyvitamin-D level down below 36 pg/ml (approx). While it remains high you are wasting your time worrying about magnesium and calcium. I eventually got my 1,25-D down to 13.5 pg/ml (remission) and I can now take a supplement with a little Vitamin-D, Calcium, and Magnesium in it. But until you get your 1,25-D down your attempts at nutritional balance will be fruitless. ..Trevor.." This is assuming you have high levels of D. If you don't, then it may be another story. We don't really know if high D applies to PWC or lymies yet. Whatever the case, he's not saying NOT to supplement with magnesium, just that it's not going to do much until you address the other issues, of which excessive vitamin D is one indicator. My own take on Dr. Marshall's work, which fits with my own thinking, is that we've gone beyond the point of no return here with these pathogens, and normal measures no longer are enough. If we'd caught them early, perhaps things would be different, but at this point, they've taken over, and until we find a way to give our immune system the upper hand, most of our efforts amount to little more than throwing pebbles at an advancing army. Of course I think we need to give our bodies the tools to support the immune system as well, good nutrition, etc. But once you get to a certain point, more serious intervention apparently is called for. The good news about Benicar is that I can find very little down side to it. If the protocol relieves our symptoms, and reduces the bacterial load, we'll have more energy to undertake the nutritional protocols that can support us. I don't know too many people who can manage to be very disciplined with their diet and nutritional needs when they've got the flu. Tha'ts basically how many of us feel as we try to function in daily life, dealing with this illness as well. penny
Isn't it nice when the pieces begin to fall into place? Scott
So, I had the blood tests and got the prescript for Benicar. Unfortunately, my insurance won't pay for that kind of dosage, so preauthorization is necessary. I decided to buy the prescript myself (just had half filled) so I've got 2 weeks worth giving me some time to figure something out with my doc to get this approved. Here's a question for you, as I doubt they'll be answering this late on the sarc board. I'm scheduled for my 100 mg minocin tonight, but I'm wondering if I should cut back on that since I've also started the Benicar, and it will probably increase the effect of the minocin. I'm already borderline herxing with the minocin as it is (just itching, that's why I've decided to switch to taking it at night). I'm wondering if I should take the whole amount. I can't afford to feel bad tomorrow as I've got things I HAVE to do. If you were in my shoes, based on your experience with Benicar, what would you do? thanks, penny
Becareful with taking both Benicar and mino together...you could experience a whicked herx. It's better to stop abx for a while and let the Benicar extinguish the inflammation and get the immune system back on track...then gradually start the mino as per Trevor's protocol. I was able to handle both because I knew that I had a light pathogen load and didn't have severe herx reaction anymore. If you are in a similar situation as I was, then you may be able to start both...but as you said, you don't want to feel bad...I'd avoid the mino for at least a few days until the Benicar has had a chance to work on the immune system. So, to reiterate...I wouldn't do the mino on top of the Benicar...I'd wait. Scott ps...I'm off to bed for the night...day 7 and all is well. I wish everyone a good nights rest. [This message has been edited by free2reckon (edited 03 May 2004).]
Here's to hoping this protocol makes things a little easier on the road to getting well. penny
Scott
I've been able to lower my Benicar dose to 20 mg tid for maintenance...keep in mind that I'm in good shape and I'm lightly infected...so my response is likely better than average. Several of us are working in the background contacting prominent LLMDs...trying to get the good news out about Dr. Marshall's work. Please help us spread the word...sometimes our good LLMDs need a little kick in the pants to get them off of the fence and there's no one that can do this better than their patients...go get 'em! Enthusiastically, Scott
Well, I've already had some positive results with the Benicar believe it or not. I've taken two doses and had the best night's sleep in ages. Feels like I took a big ol' sleeping/pain pill, something like Ultracet, without any of the groggy side effects. Pain was definitely reduced, muscles relaxed, and I slept like a log, which is not like me at all. Boy, I hope this progress continues. Also, I have very low blood pressure, and the Benicar didn't affect it at all. Thanks again, Scott, for bringing this to our attention. Even if it's nothing more than improved sleep and less pain without negative side effects, I'd be happy. But the hope that it will help us get well is so encouraging. Haven't felt this optomistic in quite a while. Am looking forward to the next dose, and whenever that happens, I know something's working. :-) (good thing it's not addictive. :-) penny
That's great news. I appreciate your report here. Benicar can react quickly...it did with me too. I notice improvement after the first dose. Sleep has been so much better on Benicar...it's not hard to see why either...inflammation in the brain (encephalomyelitis) causes our neurotransmitters to dysfunction and we have cognitive problems, sleep problems and mental illness. Have you seen Dr. Gard's paper entitled: The Role of Angiotensin II in Cognition and Behavior? I can email it to you if you haven't. Send me an email and I'll reply with it. Penny, the good news is that it does continue and even gets better with time...this is day 8 for me and I am still elated at the results. Thank you for sharing your BP results with us, I know that is a concern with many...I've tried to explain to them that this is not a significant risk, but it takes time for folks to assimilate all of this. Their not sure how much trust to put into to all of this yet. Hope is addictive...in this case that's a good thing, Scott
That's well said...good supporting evidence. Scott
Before I contracted Lyme disease, my passion was health & nutrition. I've been an advocate for the low-carb diet lifestyle for years...through my research in this area I've also discovered how important the polyunsaturated fatty acid metabolism (PUFA) is in regulating inflammation and how it is related to our fat metabolism and the insulin resistance connection. I call this the insulin resistance and inflammatory syndrome. Briefly, insulin resistance and a sluggish fat metabolism promotes inflammation. This is also a two way street in that, inflammation also promotes a poor fat metabolism and gluconeogenesis (i.e., a catabolic pathway). So, for those of us with this chronic debilitating inflammatory disease, we tend to gain weight as fat and lose lean tissue weight. That is, inflammation is catabolic, not anabolic. Since contracting Lyme disease a few years ago, I've noticed that my lean tissue is not as developed as it used to be and even though I do everything right, I tend to have a catabolic metabolism. I know this is a common problem for all of us. I knew this was related to inflammation and everything I knew to do to stop it was helping but it wasn't completely reversing it and I still had a catabolic metabolism. I'm happy to report that I can tell that my metabolism is beginning to finally change...from a catabolic metabolism back to a anabolic one. I'm losing those few pounds of fat around my waste that I didn't have until Lyme disease, and I'm getting better muscle tone and strength...and this is only in 8 days of Benicar. I find that amazing. Angiotensin II receptor blockade is definitely an important part to a successful chronic Lyme disease therapy. Scott
I think you've got it nailed right there in your email, and somehow Benicar is changing that whole dynamic. Whether it's increased blood flow, or more likely some combination of things, it's giving our bodies a chance to fight back. People have used herbals and tonics throughout history. Just because we've refined our methods, doesn't mean that every pharmaceutical is evil. People really should be reading Dr. Marshall's research before jumping to all of these erroneous conclusions, i.e. that it's masking symptoms or it's simply a pain blocker. The way Marshall's using it, it's making the minocin and other antibiotics work much better. Actually, it's making the immune system work better, so that the abx can then work. It's nothing like a steroid, Marshall actually insists that no steroids be taken, as they do tremendous damage. He has instructions for Sarc patients to wean themselves off steroids before starting the Marshall Protocol (since steroids have traditionally been the treatment of choice). And if you look up Benicar, the ONLY side effect is possible dizziness. Dr. Marshall has been sick with Sarc for 20+ years. He's been looking for a cure all that time, and he believes he's finally found it. For the first time in decades, he's functioning normally. He answers thousands of questions, provides detailed instructions down to the very labs where you can have blood drawn and how to have it drawn, will consult with your doctor, ALL for absolutely FREE. He's getting absolutely NOTHING from this, except obviously the satisfaction of helping others get well. I think Marshall is making a huge contribution to understanding and treating chronic illnesses, and people should be looking at the info he's providing objectively to see how it may provide clues or answers. Some small appreciation for his efforts seems appropriate. Of course a critical eye is important, but to claim that the therapy is harmful, without really doing the research, could be a real disservice to our community. I'm very suspicious of most protocols. I rarely jump into something without a lot of scrutiny. I have not been able to find a single reason to be afraid of this protocol. A lot of the natural methods I've studied or tried have more documented risk. I hope people will at least keep an open mind, before deciding outright that it's dangerous. I just learned that some very bright folks I know in England (who can speak for themselves) and who've been on this same path for the last couple of years, have coincidentally also recently discovered Marshall's work. They understand the mechanism behind the protocol very well and are starting it asap. So we'll probably be hearing from them soon as well. My friend Tony in Australia's also going to be doing some experiments with Benicar in the lab dish. THIS protocol, in my opinion, is worth a close look. Even if it turned out to be nothing more than symptom relief, which I don't believe to be the case, the fact that there are no harmful side effects, makes even symptom relief alone okay with me. Symptom relief means I'll better be able to do all the other complementary protocols that I'd like to have the energy to do, but am currently too sick for. I'd take that. penny
Since getting lyme I would say sleep disturbance is one of my main symptoms. I used to fall asleep whenever I went to sleep, and wake up the next morning...in fact, I could tell my brain, "Wake me up at 6:00 a.m." and I'd wake up at 6 a.m. on the dot...and not because I usually got up at that hour. Post lyme, the most I ever sleep on my own without waking up, is about 4-5 hours, and sometimes I wake up every few hours. IE fitful sleep. Not a solid 8 hours, and wake up refreshed. I bought some trytophan and tried it and it took away the wired feeling, made me feel relaxed, and fall asleep. However there is something going on with my bladder and its sensitivity, and it irritated my bladder (apparently amines, and trytophan is one, can do this). So I decided not to continue it. It told me, though, that my serotonin was screwy. However, if benicar has helped both of you sleep right away, something else is goiing on in addition to serotonin. Penny, who is Tony--and what does he do? Does he have CFIDS? What is he going to do with benicar in a lab/petri dish? Just curious, but you refer to him and say he is self educated and very smart and I'm just curious. [This message has been edited by jen13 (edited 04 May 2004).]
Yes, it's such a blessing to be able to sleep so sound again...it helps me to feel so better throughout the day too. Day 9 for me and I continue to have dramatic improvement...slept extrememly well again last night. Praise the Lord! I'm getting significant feedback from you and the word is that you are telling some prominent LLMDs about this work...good job! We are shaking up the Lyme community and they seem to be pretty receptive...I'll keep you posted on these exciting events. Peace and comfort, Scott
I'm a little confused about who you were addressing the "telling prominent LLMD's". I know that's not me because I don't traffic with LLMD's. However, I will suggest something to you. That is that you and Trevor write a piece together for immunesupport.com. That's the place Byron and I wrote our "Healing Chronic Illness at Home" piece. They are a very interesting site that is part sales of supplement, and part extremely high quality abstracts, studies, and above all, articles by doctors dealing with chronic illnesses like CFIDS, fibro, lyme etc. If you email me privately I'll put you in touch with the editor. You could write it yourself but they like an MD attached to the byline, mostly, so if you wrote it with him I suspect they'd be interested. Even though it's a drug approach, adn they tend to advocate supplements as well--but maybe you could take an overview. Their email newsalerts (which link to the articles, which they publish on the web) go out to about 38,000 people. They also have a quarterly print newsletter, which our article appeared in, but most stuff doesn't get into the newsletter. THey get a million viewers a year or something like that. the thing I like abou tthem is that their editorial side maintains high quality and good integrity, while their supplement side provides the funds. Also, the article gets archived on the web which is very useful. And I noticed with Byron's & my article that people in newsgroups picked it up and posted it. So you get the feeling you've helped others. If you do so, try not to say it's a cure!!! Just a thought. As I said, I can put you in touch with the editor with a recommendation if you want. [This message has been edited by jen13 (edited 05 May 2004).]
Yes, I just had another really good night's sleep. It's crazy. I haven't slept like that in years! It's a relief. Feels like my body's able to relax for the first time in ages. You asked: "who is Tony--and what does he do? Does he have CFIDS? What is he going to do with benicar in a lab/petri dish? Just curious, but you refer to him and say he is self educated and very smart and I'm just curious." I met Tony a few years back on the CFS forums. He was trying to tell people that they were suffering from infections, not some unknown, undiagnosable illness. He was referencing the excellent New Castle work on Staph that came out of Australia about 10 years ago and almost no one has picked up on. Except maybe Walt Tarello, the veterinarian from Italy who cured himself and his wife with medical arsenic, which tony also tried with some success before his organisms became resistant. If you have any experience with CFS forums, you'll probably know his ideas didn't go over well at all. Most people, except for a few of us, didn't get him at all. Most people had no idea how big his heart is. It was all reaction, reaction, reaction, and he got kicked off numerous forums. When he first started fighting back against what his doctors were telling him was FMS, he'd been in the emergency room 75 times. The pain and neurological symptoms were horrible. He was basically in a wheel chair at that point. He got fed up with his docs, and taught himself how to culture his own organisms and started treating himself with antibiotics. He has a way with docs, and his doc, seeing his progress, gives him anything he wants. His constant observance of the behavior of his organisms led him to constantly changing the antibiotics, and as a result, he's healthier now than he was in his soccer playing days. He's self taught but very bright, and has an amazing intuitive way of understanding this illness. He's helped my doctors, my friend's doctors and our michrobiologists. They respect him, even though the people on the forums couldn't see what he had to offer. But he can tell you what you've got just by hearing your symptoms. Anyway, Dr. Marshall has said that he's beginning to realize that Benicar has actual antimicrobial properties, and this is what Tony wants to test in the lab dish. See if there is any direct response to it as an antimicrobial. Tony has found a lot of surprises in the petri dish. For example, Nystatin has antibacterial as well as antifungal properties. But bugs will become resistant to it. That staph converts to what looks exactly like yeast in the petri dish, but under the microscope, yeast is a much larger organism. He's found that some silver works great (but not all silver) and that it doesn't stay in the body long. He's also discovered that silver pushed with hydrogen peroxide is much more effective. And recently, that nebulizing hydrogen peroxide has given him his antibiotic sensitivities back. He's the one who got us "nebulizing" antibiotics with asthma machines before we even knew about the new nebulizers. He says that bugs can't stand salt (as long as it's LOTS of salt) and that we should take as much salt as we possibly can. He's the one who discovered the biofilm (he called it slime) aspect of these organisms before we had any research to support it. He says we don't have Lyme disease, we have Slime disease. Time after time, Tony has told me something that sounded far fetched, just to be proved true a little down the road. I trust him, and he likes the reasoning behind Benicar and is excited about it too. So that's my little tribute to Tony. Those of us who've been helped by him, have a huge warm spot of gratitude for him. penny Is there hope? We are in year 5 of CNS lyme..still ill.
Funny he calls it slime as I call it SLYME! As in, SLYMED! I'd like to connect with him. Have to respect someone who has that much initiative. I think the silver does stay in the body--but anyway... The antimicrobial aspects of benicar--well, as soon as Scott mentioned peptides my ears have perked up and I am just waiting to hear more. I haven't gotten to the point where I could call/contact him myself to ask questions. I am reading the Paul Gard article now--Scott, btw, if you are reading this post, is that in press, or already published? (no indication on the printout). And if so, when? We do not actually have an immune system. We have a neuroendocrine immune system, i.e. all of it is interlocked and signalling constantly often using the same chemicals. I know that work has been done with deprenyl, and its neuroprotective effects. I'd like to know what the antiaging conference was and which researchers were investigating neuroprotective effects of benicar. Again, this is just curiosity. Glad you slept well. I hate drugs but you almost have me tempted to consider this one, if it could restore natural sleep. But I tend to be cautious and I'll wait to hear other reports over a period of time.
Gee, sleep felt so good, I want to go back to bed! penny
penny
Forgive me if this was mentioned earlier but I can't make it through all the previous posts here. The reference you made above to a paper with Cognitive or Cognition in its title -- are you saying Benicar is also helping with brain fog?! Brain fog, fragmented sleep, muscle pains and spasms, and weight gain are my most distressing lyme sx, and it sounds like Benicar addesses all of them?! Where do I sign up? Thanks, Sue
penny
If you understand that the inflammatory cascade triggered by our infection is at the heart of this diease...when you correct the inflammatory cascade...as Benicar does...you correct the underlying problem and all symptoms begin to resolve....I call that a cure! So, yes, those symtoms you mention, including cognitive problems are resolved with Benicar therapy. I'm very sharp mentally again...almost 100% back. Scott
Besides on Marshall's protocol you are taking low-dose abx which is dramatically more effective at killing borrelia than one taking high doses of abx with out exstinguishing the inflammatory cascade. Don't you think the immune system is the best defense we have??? If not, you don't understand this disease very well. Get busy and study Marshall's work...obviously you haven't. Scott Jen13, Oh yes...I see you softening up...this is making too much sense for you to ignore it any longer...You'll soon be one of the best advocates for Marshall's protocol...I see it coming ;-) Welcome, Scott
I was going to e-mail you privately, but this discussion is decidedly OUT in the OPEN, so I will ask here. The condensed version is elementary, the pathogen (Borrelia) causes inflammation (cytokine cascade) through its products (endo- and exo lipoproteins) that do TWO things. 1. This inflammation is the symptomology of Lyme Disease. 2. Dramatically disables your immune system (macrophages) AND synthetic antibiotics from attacking the pathogen thus allowing it to persist. (See step 1). Without "breaking" the cytokenic cascade and eliminating the persistant inflammation, any attempt at anti-microbial So with that understanding, the goal of any curative therapy is to restore normal health WITHOUT continuous therapy. Has Trevor Marshall successfully treated patients to health while free of therapy? The concern that is being voiced here is that temporarily reducing bacterial-induced inflammation should bring about immediate and dramatic relief, in fact, this IS the definition of meningitis. But, without removing the root causitive cascade-intiating agent, the inflammatory cycle will return and persist. Please elucidate the curative properties of this therapy in relation to Borrelia. Another words, how does the body become FREE of borrelia using Benicar (or another ARB inhibitor)? BTW, I believe, as do you, this is close to the final step in treating persistent bacterial infections of many types. I envision it as a "one-two punch." 1. Reduce bacterial induced inflammation via ARB-inhibitor. 2. Administer antimicrobial agent, natural or synthetic. 3. Infection eliminated. I have been thinking about this in the Augmentin model. Amoxycillin is WAY more effective when combined with clavulanate Potassium. My GP explained it as "unknown" method of action. I see Benicar essentially as super augmentin when in combination with antibiotics. The only way to study this effect is in tissue. NO DISH STUDY would be effective. This is PROBABLY, JUST MAYBE why all the agents that WORK in the dish (lab), don't work in vivo. In the DISH, colloidal silver, penicillin, etc. work PERFECTLY against borellia, BUT, hardly at all in the body. There is NO inflammation in the dish, there is in the body! A study SHOULD be done testing the effectiveness of current antibiotics in the presence of inflammation in tissue, then without, and chart the results. O.K., I am certainly rambling here, but I just found the answer from Dr. Marshall on his site. Here goes; Benicar BLOCKS protein synthesis of bacteria. By making certain proteins, that cause inflammation, the bacteria protects itself from your immune system. If you stop it from making those proteins, "the microbe can no longer manufacture the proteins it needs to protect itself from the immune system, and can be destroyed by the immune system." It is time to roll on this. I appreciate the work you have done. Keep on, keepin' on. -Lyme Wolf [This message has been edited by Lyme Wolf (edited 05 May 2004).]
Also, we don't know what to do about the many infected with babesia, bartonella etc...and mino. I hope if Trevor is a self-taught genius, that he will be willing to suspend his biases and "discover" things along with the lyme community, developing over time a protocol for them that works. It will not be the same as sarc in many cases, I suspect. And we will probably see side effects from benicar in some...it's just the nature of the bellcurve beast. For some, tolerable, for others not, who knows. It does make scientific sense to me, though, or is starting to. Tree patrol, you were not being insulted. Antibiotics never do all of the job. The immune system HAS to do most of it. I know many people are under the mistaken impression that enough antibiotics will kill ever last bugger, but that is just not true. They aid and abet the immune system.
(repeated testing..pcr, ect..)? Curious also about the question as to lenghth of time on Benicar..is it something used indefinately..just in conjunction with abx, or is it something used only when inflammation is significant, and then reduced as infection load goes down.. Also..low dose abx is in some cases of very severe Lyme infection with extreme symptoms is not going to be sufficient..but I am gathering that Benicar could be used with higher doses, if need be. Mo [This message has been edited by Mo (edited 05 May 2004).]
Lets see he's been treated 8 days on it and its the fix of the century. ------------------ Many of you are having a difficult understanding this...yes the pathogen triggers inflammation, i.e., an immune response that is supposed to defend us against the pathogen. However, it is this inflammatory response that is going out of control and actually causing our disease...damage to our bodies. Since the pathogen is elusive and evades the immune response...the infection goes chronic and the self-perpetual inflammatory cascade, described by Marshall, kicks in. This inflammatory cascade causes the immune system to become paralyzed and it can't attack the pathogen as efficiently as it normally would. But it sure can and does cause diseaes and symptoms...that's what borreliosis is. When we fix the inflammatory cascade with Benicar...the immune system begins to function normally again (maybe better than normal)...it's ability to kill the pathogen is better. I.e, Benicar extinguishes the inflammtory cascade without causing immunosuppression as corticosteroids do and it enhances or modulates it's response to kill the pathogens. There's just no down side to Benicar therapy...save one....it can't be used by pregnant or potentially pregnant women. Scott
Do you use a LLMD? If so, and someday he/she recommends that you try Benicar...what will you say? Scott
Many folks experience dramatic improvement as the inflammatory process is broken..but about 5% can have a dramatic herx as the bacteria are killed. The requirement for a low antibiotic dose is because the bacteria is being made vulnerable by the action of the Benicar..and a low dose 100mgs a day of Mino is about all someone can handle in many cases to prevent a huge herx. He was extremely knowledgeable..and I am pausing my Rulid-Bactrim regime and starting the Benicar tomorrow. He said 100mgs of mino every two days and one half a Bactrim every two days is sufficient from that point forward...often all that is neccessary.
Do you use a LLMD? If so, and someday he/she recommends that you try Benicar...what will you say? Scott Side effects are the concern here and there are side effects.
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 Sue
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! Nelly (in Paris-France)
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. Scott
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? Somebody better come up with something, ..or there are going to be more & more sick people looking for answers. Hooray for Trevor Marshall! I am trying it tomorrow and hopefully It will work. By the way, costs about $30 for a weeks worth..
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. Hope this helped.
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... 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: 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. [This message has been edited by JRWagner (edited 05 May 2004).]
"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." DMC
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 ).. When you are ready or according to your LLMD, switch to the low dose mino, bactrim and zithro...again slowly ramping up....
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 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 - Barb
You asked: How does one know infection itself is reducing, other than hypothisis... ****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****** penny 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).] [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. Scott
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 [This message has been edited by Mo (edited 05 May 2004).]
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. I guess I didn't time this too well, heading into summer in CA! 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. The Post From France
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 ;-). Scott
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! Nelly (I WANT to believe in The Marshall Protocol as much as the next guy/gal but not if I have to convince myself that I am "resistant to viral infections" first!)
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
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 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. I guess my gut reaction is just that old superstitious feeling about "If it seems too good to be true, then it probably is", which is making me feel so hesitant, without studying it more in-depth for myself first. Yes, we need both R&D and QA...I'm definitely a R&D type...you are QA person. I respect that, Scott
And without angiotensin II receptor blockade...there is no relief from this perpetual inflammatory cascade.
Posted by free2reckon (Member # 4563) on :
riversinger,
Posted by jen13 on :
Okay, I think these blanket statements are dangerous. IE this appears to be the only part of the inflammatory process that is self-perpetuating...
Posted by free2reckon (Member # 4563) on :
jen13:
Posted by bpeck (Member # 3235) on :
OK-
and the abx/Benicar therapy some are using.
I think there's about 100 people doing the "field trial" of abx, or abx and Benicar.
And a Very very large percent of those people
are ALOT better (go read the posts on Sarc info).
Their disease improvement can be documented with lung Xrays, and lung function.
variants of some species).
admit there's been a CWD bacteria found in any biopsies - then it's handled like "post Lyme Syndrome".. the immune system gone awry.
They are conventional Docs afterall, and constrained by their training and their job description for the public.
Posted by phage (Member # 5533) on :
>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.
Posted by jen13 on :
Phage, thanx for a post that makes sense and is reasonable. I agree, there's no reason not to measure your D1-25 levels and see if they're elevated. I don't know if an HMO type doc would do so but I'm curious and will try to strong-arm mine (so the test will be free).
Posted by pennyhoule (Member # 5611) on :
Actually, I think that Doctors of Veterinary Medicine are often better physicians than doctors of humans. I've often said I wish I could be treated by my vet. I know that my bird gets better lab testing for bacterial infections than I can get. I'm not joking about that. DVM's don't have quite the same constraints that the insurance and pharmaceutical controlled AMA trained doctors do.
Posted by free2reckon (Member # 4563) on :
Penny,
Posted by lymerx (Member # 1278) on :
You say that the inflammatory cascade causes "all of our symptoms." Does this include neuro ones. Does Benicar get passed the blood brain barrier effectively? I have had lyme disease for four years. I have been taking zestril, an ACE inhibitor for 10 years and wonder if the fact that I have ONLY neuro symptoms (no joint pain) may be due to the fact that i have taken zestril all through my lyme. Hmm??
Posted by riversinger (Member # 4851) on :
quote:
Originally posted by phage:
>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.
Phage,
Posted by chunga (Member # 3775) on :
Hi Scott,
Posted by Scrambled_brain (Member # 3071) on :
Scott
Posted by free2reckon (Member # 4563) on :
Lymerx,
Posted by jen13 on :
Scott, you are posting on the right forum, I just personally feel you are too all-or-nothing about this. You have every right to be happy you're feeling better, to find the science as it stands very intriguing, but to be recommending it on separate threads for lymie kids, or saying it will be without side effects based on people's postings on the internet, or saying this is the key to the cure, etc, is too premature. People are interested, I'm myself trying to inject caution into your statements because they are too all-or-nothing. Lisa had a good point and is a nurse who has *seen* side effects from benicar, that is worth listening to, it doesn't mean throw the baby out with the bathwater, it *does* mean lymies ought to get tested, see if they have this marker for inflammation, some may try benicar, and there will be reports over the next months on whether it was helpful. Just like with ICHT, or other new therapies, or rife, there is a bellcurve of response. There is no magic silver bullet in a complex multifactorial chronic infection.
Posted by robi (Member # 5547) on :
Hi Scott and Barb,
I definately appreciate what you are doing. I have been diagosed with sarcoidosis but didn't really think it was an accurate diagnosis because all I had was a no-caseating granuloma. According to research I have done you have to have other symptoms that match the Sarcoidosis profile to be dx withsarcoidosis. My chest x-ray,SED, and ANA were all normal. So I went in search of another reasonable explanation. A friend mentioned Lyme and when I researched that, it made much more sense. I did have a tick bite and rash in November 2003. Now after 3 or so months on the sarcinfo board and recently getting to this board I am amazed at how this is all connecting. I seem to be one of the folks in which Lyme bacteria has caused my immune system to from a granuloma (a symptom of sarcoidosis). I don't have a positive lyme test yet so I am not 100% sure it is lyme, but my LLMD is treating me. I have also been told by several intelligent folks (including an extremely LLMD) that granulomas aren't usually seen in Lyme. After 1 week on Doxy I am feeling a bit better. I will bring my doc this info on my next visit and see what she thinks. I actually have the Benicar sitting in my med chest but want to consult with her 1st.
D, 1,25 Dihydroxy 39.7 pg/ml (8-52)
D, 5 Hydroxy 26.5 ng/ml ( 8.9-46.7)
robi
Posted by Mo (Member # 2863) on :
I just opened this..and I can't give it due time today..I want to read over again..
Posted by bpeck (Member # 3235) on :
robi:
If you have only been symptomatic since the fall of 2003 - it is quite possible that you do not fall in the category of "chronically inflammed".
It's important to stay focussed on the good results your having with Doxy..
If you're seeing results, stay on the Doxy, and discuss all this info at your next appt. with your Dr.
Posted by Scrambled_brain (Member # 3071) on :
Robi
Posted by bpeck (Member # 3235) on :
In Sarc MOST people who are symptomatic
have a D ratio above 2.0
(but I'd have to look them up to see what they were) . But ACE is not the same as the
D value measurement (and subsequent ratio).
Barb
Posted by Byron2 (Member # 2009) on :
It appears that Marshall's protcol had the success that it did by following the various components, ie, testing, sun avoidance, vit d avoidance if indicated ect...
Posted by bpeck (Member # 3235) on :
Byron2:
Posted by jen13 on :
I find this confusing from Dr. Marshall's paper:
IN 1949 Dr. Guy Scadding was having success using the hormone calciferol (d2) in lupus, so he tried it in 9 sarcoidosis patients. Now, Marshall says d2 is actively convereted to the inflammatory 1,25-dihydroxyvitamin form.
---
Posted by JRWagner (Member # 3229) on :
Jen...I tend to bend in your direction on this one. I have two friends with long-term Chronic Neuro Lyme that have been taking Benicar for years...for their high blood pressure, along with MASSIVE amounts of abx and every type of detox, alternative, Chinese herbs, homeopathy, hyperbaric (four months, single chamber...2.5 atmos)etc., etc., ad nauseum. By they way, they both are patients of Dr. B.
BUT...I too will ask my LLMD, one of the ILADS guys that has a study of his own going on, what he thinks...and yes, I will try it.
JRW
Posted by Lyme Leftie (Member # 4272) on :
What is Benicar? Would my LLMD have to prescribe it? I've had this for so long and just got done with 6 months of IV abx with not much success. I'm willing to try anything at this point.
Posted by rosesisland2000 (Member # 2001) on :
Scott, I've printed out the protocol and taking it to my PCP's appointment on Thursday. He has been willing to try anything for me to get better and I'm sure he'll be up for this bout, too.
Posted by bpeck (Member # 3235) on :
JRWAGNER:
The MP protocol uses Benicar much more often
than it is taken for blood pressure.
You know it when UV light affects your eyes, and/or causes nausea and fatigue. This symptom is in the majority of Sarc people, and it occurs in some Lyme sufferes also.
Sarcinfo and ask the question directly to the 3 people (Trevor, Meg and Belinda) who are best equipped to answer.
The efficacy can't be tried in print on this forum...The information is out there, and people can do with it what they will (or not).
about the Mprotocol, any more and I'll just
be repeating myself.
Plus my comuter is getting so slow getting to page 5!!! of this thread.
Posted by bysunrise (Member # 1876) on :
Hi:
I would appreciate the following info.
1. What is the Vit. D test; what lab etc?
2. Do people generally have a low Vit.D level or is it high?
Thank you
best,
lea
Posted by bpeck (Member # 3235) on :
bysunrise:
http://www.sarcinfo.com/d-ratio.htm
Posted by ArtnSoul (Member # 4561) on :
Scott,
Posted by jseaton357 (Member # 5618) on :
Wanted to say, concerning the hypotension issue, if it is really such a concern then those of you may want to take licorice which most certainly WILL raise your bp accordingly. I used to have super low bp like 80's/50's and when I took licorice it got up to 110/60's.
Also, Scott, would you say that use of Benicare eliminates need for taking other anti-inflammatories? I did see that someone said they were being bombarded with this info when ironically you are the one who started the thread so if one doesn't like the thread, why stick around to be "bombarded"?
Jason
Posted by jen13 on :
Barb, with due respect, that explanation doesn't make much sense because it is the d-vitamin metabolite that is being touted as *the* marker for inflammation, and is being measured as it's brought down, and it is supposedly the inflammatory cascade that this single metabolite initiates that is so important.
Posted by jolbell (Member # 4811) on :
Dear Scott,
Posted by free2reckon (Member # 4563) on :
Jen13,
I don't agree with Lisa's point regarding her *seen* side effects from benicar...too many variable in stories such as that. Dr. Marshall's clinical studies are valid regarding this.
Posted by free2reckon (Member # 4563) on :
Robi,
Posted by jen13 on :
Oh Scott....
Posted by free2reckon (Member # 4563) on :
I agree with Barb regarding this...however, I also would consider using Benicar to prevent this infection from becoming a chronic disease and IMO, I believe Benicar will help accelerate the benefits of the abx therapy and you will clear the infection earlier.quote:
Originally posted by bpeck:
robi:
If you have only been symptomatic since the fall of 2003 - it is quite possible that you do not fall in the category of "chronically inflammed".
It's important to stay focussed on the good results your having with Doxy..
If you're seeing results, stay on the Doxy, and discuss all this info at your next appt. with your Dr.
Posted by free2reckon (Member # 4563) on :
JRWagner,quote:
Originally posted by JRWagner:
Jen...I tend to bend in your direction on this one. I have two friends with long-term Chronic Neuro Lyme that have been taking Benicar for years...for their high blood pressure, along with MASSIVE amounts of abx and every type of detox, alternative, Chinese herbs, homeopathy, hyperbaric (four months, single chamber...2.5 atmos)etc., etc., ad nauseum. By they way, they both are patients of Dr. B.
BUT...I too will ask my LLMD, one of the ILADS guys that has a study of his own going on, what he thinks...and yes, I will try it.
JRW
Posted by riversinger (Member # 4851) on :
This possibility has really intrigued me, so I finally posted some questions on the sarcinfo board. I'll let you know what response I get back.
To sarcinfo:
Hi! I was referred to this site by some people who feel this protocol could work in chronic Lyme disease. I've been doing some reading, and it sounds like the protocol could be helpful. I hope my questions are acceptable here.
Posted by free2reckon (Member # 4563) on :
Jen13,
Posted by TX Lyme Mom (Member # 3162) on :
I'm feeling a little embarrased to post this question because I still haven't caught up yet with all of these concepts. However, the discussion is progressing so quickly that I don't want to wait too long to post it, so here goes.
Please take a look at this somewhat related topic about LPS/NO/VitD & sun sensitivity, posted recently. (Don't worry, it's a very short topic.) I'm curious if you can reconcile or explain how/why this CFIDS doctor (Dr. Plotnikoff) could obtain beneficial results in CFIDS patients by supplementing with Vit D, based on his research about finding low levels of Vit D (hypovitaminosis D) in CFIDS patients.
Posted by bpeck (Member # 3235) on :
People:
have to sign off on these threads - I just have a ton of stuff to do - and while I'm 100 % Lyme symtpons free you can't inagine how much work I want to do out side in our short Vermont spring (before BUG - flying bug that is - season).\
I wish you all good health.
Posted by troutscout (Member # 3121) on :
Ok,
Now is the time in your life to find the "tiger" within.
Let the claws be bared,
and Lyme BEWARE!!!
Iowa Lyme Disease Assoc.
www.ildf.info
Posted by troutscout (Member # 3121) on :
I have been an active sports enthusiast for years...I play thru just about everything....even a completely detached compound fracture of the right pinky....
so pain is a second nature thing for me.
Posted by phage (Member # 5533) on :
Tx Lyme Mom,
Posted by JRWagner (Member # 3229) on :
Hey Trout...perhaps if you stopped walking in front of cars you would not have so many fractures!!!!NO???
Let's keep track of everyone going to do this protocol...no cheating.
(yes, I know...iffy at best) before and after treatment?
This is an unsupported assumption or theory, at best. The pear reviewed research has NOT shown this at present. I myself have no inflamation markers.
Peace, love and wellness,
JRBenicar
Posted by TX Lyme Mom (Member # 3162) on :
quote:
Originally posted by troutscout:
when 15 and in track...we all came down with a NASTY bronchitis...everyone else ran to the Doc...I choose NOT to, I eventually did and never recovered until the following summer....since then I have had night sweats, etc.....I have cysts in my neck along the sping and lymphomas...everywhere.
I did a couple of searches on PubMed pertaining to sarcoidosis and I found citations related to both TB and to Mycoplasma pneumonia. Who know what your bout with bronchitis was some 2.5 decades ago, but it could be that you acquired some low grade chronic infection way back then. In other words, Bb might not be your only pathogen causing chronic, persistent symptoms today. Therefore, I agree that this therapy, based on Marshall's ideas, might be something for you to look into further.
Posted by lymewarrior03 (Member # 3891) on :
I really love pistachio pudding
Posted by JRWagner (Member # 3229) on :
TX...make mine chocolate and perhaps some butterscotch please.
JRW
Posted by TX Lyme Mom (Member # 3162) on :
Phage,
I failed to acknowledge your explanation to my question on the previous page (5) of this topic. In all honesty, I failed even to take notice of your explanation, until I decided to print out the entire topic so that I could highlight portions of it. That's when I realized that I had overlooked it. Thanks, Phage, your explanation makes good sense to me now, even without the complete article upon which to base the interpretation. This whole topic has been a bit mind-boggling, to put it mildly.
Posted by free2reckon (Member # 4563) on :
Day 6 with continued dramatic improvement of symptoms using Benicar...
Posted by rosesisland2000 (Member # 2001) on :
quote:
Originally posted by free2reckon:
Day 6 with continued dramatic improvement of symptoms using Benicar...
Posted by levity101 (Member # 1528) on :
(It was suggested that I move this post here so it's not missed. I originally posted under the subject "ARBs and the Marshall protocol"...)
I wanted to understand more about ARBs and found the following site -
http://www.medscape.com/pages/editorial/resourcecenters/public/arb/rc-arb.intro
Nancy
Posted by jantar (Member # 3545) on :
Question to Scott
Posted by jantar (Member # 3545) on :
SCOTT I MEAN GLUTHATIONE, SORRY
Posted by Gus (Member # 89) on :
Scott - Besides better sleep, what other improvements have you noticed? What symptoms are gone, compared to before starting this protocol?
quote:
Originally posted by free2reckon:
Day 6 with continued dramatic improvement of symptoms using Benicar...
Posted by pennyhoule (Member # 5611) on :
Actually, Bryan, Marshall says that herxing IS necessary, as it's a sign that the abx is working. However, the inflammatory response interferes, making the abx less effective, so the Benicar reduces the inflammatory response, enabling us to tolerate the herxing better. You regulate your meds, and increase the abx in phase II, as you are able to tolerate more herxing. It's brilliant actually, and based on people's responses, I'm VERY encouraged.
Posted by pennyhoule (Member # 5611) on :
p.s. His reasoning behind Minocin is really good. It has better tissue penetration, and is the abx that is least likely to become ineffective due to organism resistance. Combine the effectiveness with the new delivery protocol, and Benican, it has an even a better chance of working. In phase II he adds two more abx. I haven't investigated the reasoning behind the two he chooses, but he seems to know his stuff regarding bacteria, so I feel pretty good about his recommendations. I'm thinking that if the Benicar works, making the herxes more tolerable, adding Rifing in phase II (I'm already doing low dose minocin as it is) might be just the ticket to a less painful recovery.
Posted by free2reckon (Member # 4563) on :
Nancy,
Q: He has problems With LOW blood volume and LOW aldosterone and LOW blood pressure...not high.
Posted by pennyhoule (Member # 5611) on :
Scott, I read the following statements by Trevor Marshall on his site:
Posted by pennyhoule (Member # 5611) on :
Bryan, Here's a direct quote from Trevor Marshall. Sorry, can't recall exactly where, but I can post the entire thread if you'd like:
Posted by free2reckon (Member # 4563) on :
Bryan,
Q: I've always thought low-dose antibiotics would be a recipe for antibiotic-resistant Bb?
Posted by free2reckon (Member # 4563) on :
Gus,
Posted by free2reckon (Member # 4563) on :
Penny, I see you are doing your homework...thank you for helping me get the group on board.
Posted by free2reckon (Member # 4563) on :
Penny,
Posted by jen13 on :
I'd like to see more about benicar blocking peptides...
Posted by MarieElaine (Member # 5408) on :
I sent Dr. J a fax on Friday asking him to please take a look at Benicar and advise if it is appropriate for children. I also sent him the four page "How to start the Marshall protocol".
Posted by Lymetoo (Member # 743) on :
All I can say is WOW! Thanks, Scott! I don't have much time during the week to read here on Lymenet, but finally found the time today. I'm glad I did!
oops!
Lymetutu
Posted by Byron2 (Member # 2009) on :
Hi Scott...
Byron
Posted by riversinger (Member # 4851) on :
Byron,
Posted by hwlatin (Member # 4123) on :
Riversinger
Posted by Byron2 (Member # 2009) on :
Thanks Riversinger...
Posted by jen13 on :
I hope I will be able to get through to him sometime this week. I see from a posting over on CFS-FM (penny) that replicated some of his posts that he is either reading lymenet or else being notified by Scott of questions on lymenet (maybe the latter).
Posted by free2reckon (Member # 4563) on :
Byron,
Q: It appears that Marshalls protocol calls for working up to taking 120 mg a day...
Posted by free2reckon (Member # 4563) on :
hwlatin,
Q: I have a very real question about how one who is already taking several antibiotics, to deal with co-infections begins this protocol. I am not sure I would want to stop everything and start over.
Posted by winsomme (Member # 5623) on :
scott
bill
Posted by jen13 on :
Here is another point I don't understand:
Posted by free2reckon (Member # 4563) on :
Jen13,
Posted by free2reckon (Member # 4563) on :
winsomme:
Posted by Marnie (Member # 773) on :
Scott, you said, "Q: I've always thought low-dose antibiotics would be a recipe for antibiotic-resistant Bb?
Murgia R, Piazzetta C, Cinco M.
Dipartimento di Scienze Biomediche, sez. Microbiologia, Universita degli Studi di Trieste, Trieste, Italy. [email protected]
The bactericidal effect of Fab-CB2 is not dependent on the induction of spirochetal proteases but is dependent on the presence of Ca2+ and Mg2+.
Posted by pennyhoule (Member # 5611) on :
Jen, those posts by Marshall at CFSFMExperimental were simply some answers I'd culled from his website which were relevant to CFS.
Posted by riversinger (Member # 4851) on :
quote:
Originally posted by hwlatin:
Riversinger
Posted by riversinger (Member # 4851) on :
quote:
Originally posted by Byron2:
Thanks Riversinger...
I would be curious to know how he deals with people that have viral infections...
www.sarcinfo.com
Posted by riversinger (Member # 4851) on :
quote:
Originally posted by jen13:
It doesn't make a lot of sense to follow the exact same protocol unless someone has the d-25 problem...otherwise why stay out of the sunlight?
Posted by free2reckon (Member # 4563) on :
FYI,....here's a response from Trevor to a question I asked him regarding orthostatic intolerance and fibrin production (coagulopathy).
Posted by jen13 on :
Nice you've got his ear, Scott.. Let's see what he says in a week.
Posted by Lyme Wolf (Member # 5463) on :
Ooops, I did it again...
Related Articles, Links
Hypercalcemia due to endogenous overproduction of active vitamin D in identical twins with cat-scratch disease.
Case Reports
Some of you may not find this relevant until you know two things:
Posted by Marnie (Member # 773) on :
Once again folks...it takes Ca and Mg to make healthy antibodies to fight all bacterial infections. ALL.
http://www.microimm.mcgill.ca/coursenotes/513NKILL-Note.pdf
Posted by pennyhoule (Member # 5611) on :
Dr. Trevor Marshall is a pretty smart and thorough researcher. He has a lot to say about magnesium. IF you have hypervitaminosis, which means excessive vitamin D, then what he says below pretty much sums it up. He refers to a number of medical studies throughout to support his arguments.
Date: 12-06-02 06:29
I've been supplementing with magnesium for ages, I love magnesium, I wish I could say I've been cured. I can't.
Posted by free2reckon (Member # 4563) on :
Lyme Wolf,
Posted by pennyhoule (Member # 5611) on :
Hey Scott,
Posted by free2reckon (Member # 4563) on :
Penny,
Posted by pennyhoule (Member # 5611) on :
Thanks so much, Scott. I'm glad I asked, as this is what I was wanting to do, even though the minocin has definitely helped me and I was a little reluctant to stop something that's working. For some reason, I can't download the Phase I protocol at the sarc site without crashing my internet. Nothing's ever easy with this illness. :-)
Posted by free2reckon (Member # 4563) on :
Penny, Send me an email and I'll forward Marshall's protocol to you along with some other info you might find worthwhile.
Posted by free2reckon (Member # 4563) on :
Day 8 on the Marshall's protocol including Benicar and I'm doing great....it's poetic that this post is found on page 8 of this thread...I'm sorry I couldn't resist :-)
Posted by pennyhoule (Member # 5611) on :
Thanks Scott,
Posted by free2reckon (Member # 4563) on :
Hi Penny,
Posted by free2reckon (Member # 4563) on :
24-bit,
Posted by free2reckon (Member # 4563) on :
Another benefit I should mention, and I'm happy to report, is that my metabolism is improving.
Posted by pennyhoule (Member # 5611) on :
24 bit,
Posted by jen13 on :
That's interesting about Scott & Penny and a good night's sleep.
Posted by free2reckon (Member # 4563) on :
Jen13,
Posted by jen13 on :
Scott, glad you slept well. There is an inherent responsibility in writing about these things, which is not to toot the horn too loudly, better to say, this helped me, it helped others, it may be something you want to investigate. People with little medical knowledge can get very easily swayed by reading something, and don't make good decisions for themselves. So it's an ethical responsibility to temper your excitement with caution and reserve.
Posted by pennyhoule (Member # 5611) on :
Hi Jen,
Posted by Bill492 (Member # 5634) on :
Please post full contact info for Dr Marshall including tests and treatment protocol!!!
Posted by jen13 on :
I don't know anything about Tony---sounds fascinating though. Which CFS forum was this on? Actually I'll just email you privately. I am surprised anyone used arsenic--the old syphilis cure.
Posted by pennyhoule (Member # 5611) on :
Jen, You can email me and I can send you his phone number if you'd like.
Posted by pennyhoule (Member # 5611) on :
Bill, all the information is at the following site:
http://sarcinfo.com/
Posted by Sue vG (Member # 3143) on :
Scott,
Posted by pennyhoule (Member # 5611) on :
Yeah, sounds crazy doesn't it? There's even a paper that shows how angiotensin II blockers prevent migraines. I can't wait to see if that one holds up. :-)
Posted by free2reckon (Member # 4563) on :
Sue,
Posted by treepatrol (Member # 4117) on :
Mean while spirochetes keep eating away at your nerve coverings and maybe give you heartblock.
Kill spirochetes then stop the cascadeing effect or even take benicar during abx treatment.
Posted by free2reckon (Member # 4563) on :
Tree, that's an ignorant response...you don't seem to understand that when the inflammatory cascade is exstinguish the immune system can then be efficient at killing the pathogen. Inflammatory cascades paralyze the immune system and cause damage to the body...that's what our disease is.
Posted by free2reckon (Member # 4563) on :
Jen13 said, "I hate drugs but you almost have me tempted to consider this one, if it could restore natural sleep. But I tend to be cautious and I'll wait to hear other reports over a period of time."
Posted by Lyme Wolf (Member # 5463) on :
Hi Scott,
activity is dramatically muted. Another way of looking at it would be to understand that in a NON-inflammatory envinronment, your antibiotic (or samento) is 100x or 1000x more effective.
Posted by treepatrol (Member # 4117) on :
I give up Ive been told twice now that Iam ignorant in my responce. 
Posted by jen13 on :
LOL, Scott. Let's give it 6 months to a year and really see how the lyme community fares. I can't take minocycline because of a concomitant (and previous to lyme) serious fungal issue. So I'll have to do ozone. I am doing a liver flush tomorrow (yuck) before reinstating my ozone protocol, albeit slowly.
Posted by Mo (Member # 2863) on :
Is there data available on testing or monitoring of the status of infection after a period of time on Benicar in sarc patients?
How does one know infection itself is reducing, other than hypothisis...
just wondering..
Posted by treepatrol (Member # 4117) on :
quote:
Originally posted by jen13:
LOL, Tree patrol, you were not being insulted. .
Yeah I think he was (insulting) Ive read everything he's quoted sofar and I understand and Iam not on the bandwagon sorry.
Do unto others as you would have them do unto you.
Posted by free2reckon (Member # 4563) on :
Lyme Wolf,
Posted by free2reckon (Member # 4563) on :
So Tree,
Posted by Bill492 (Member # 5634) on :
I had a conversation with Dr Marshall. Some info: The Benicar directly affects the Bacteria's ability to survive and helps the body kill the lyme Bacteria itself.
Posted by treepatrol (Member # 4117) on :
quote:
Originally posted by free2reckon:
So Tree,
Well yes I have LLMD and if he recomened it I might try it. But we are not at that point are we? Hes asked if I wanted to try Iv's and as far as Iam concerned Iam not at that last ditch effort either.
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.
Posted by Sue vG (Member # 3143) on :
Scott, but I am very encouraged by the Benicar findings.
Posted by nellypointis (Member # 1719) on :
Many of you are having a difficult understanding this... (quote from the film : "a Fish Called Wanda")
Posted by free2reckon (Member # 4563) on :
Nelly,
Posted by treepatrol (Member # 4117) on :
Ta Da!!!!!!!!!!!!!!
Posted by minoucat (Member # 5175) on :
The coinfection issue has been mentioned several times (thanks Riversinger and hwlatin for some very clear posts). My understanding is that Benicar is still assumed to be an important way to manage any chronic inflammatory response that is triggered by a chronic illness, but that the minocin part of the protocol is only for CWD bacteria.
Posted by Bill492 (Member # 5634) on :
Scott has been incredibly helpful and caring. This disease needs innovative and out-of-the-box thinking. People are still sick and sucking down volumes of antibiotics and not getting better!!!
Posted by Bill492 (Member # 5634) on :
< 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..>?
Posted by JRWagner (Member # 3229) on :
24....
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?
"Electrolyte Inbalance" mean anything? How about "fluid retention...increasing blood volume...increasing blood pressure" sound?
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
Posted by dmcbrayer (Member # 5296) on :
Comments from Dr Marshall's work:
Posted by robi (Member # 5547) on :
Scott,
I am currently taking doxy 400mg/day and biaxin 1000mg/day. Do you think I could add the benicar and have a postitive effect? I am not sure, but I think it wouldbe better to stay on what I have stated on and add the benicar? Thoughts?
robi
Posted by free2reckon (Member # 4563) on :
Dmcbrayer,
Posted by free2reckon (Member # 4563) on :
Robi,
Posted by Bill492 (Member # 5634) on :
Robi,
Posted by bpeck (Member # 3235) on :
Yikes! This thread is reaching the melt-down point.
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.
this should be approached like any other drug which has shown potential in a field trial.
Posted by pennyhoule (Member # 5611) on :
Hi Mo,
just wondering..
(repeated testing..pcr, ect..)?
Posted by phage (Member # 5533) on :
I've grown weary of the back and forth about Benicar and magnesium and nearly missed Penny's testimony on Benicar. I was considering starting a thread for Benicar data only. JRWagner has done this in the "Personal Experiences With Benicar...ongoing poll ".
Posted by free2reckon (Member # 4563) on :
Here's some excellent evidence that the immune system is stuck in an inflammatory mode and cannot go into an immunity mode in chronic borreliosis...this fits well in my model of the pathogenesis of borrelia and also with the work of Dr. Marshall and the angiotensin inflammatory cascade:
http://www.mdlinx.com/IDLinx/thearts.cfm?artid=949428&specid=12&ok=yes
Posted by Mo (Member # 2863) on :
Thanks Bill and Penny for answering some of my questions.
Posted by riversinger (Member # 4851) on :
quote:
Originally posted by 24-bit:
One other thing I forgot to mention is that I have no inflamation markers at all,
Posted by nellypointis (Member # 1719) on :
[QUOTE]Originally posted by JRWagner:
[B]24....
Posted by free2reckon (Member # 4563) on :
Mo,
Posted by free2reckon (Member # 4563) on :
Riversinger,
Posted by nellypointis (Member # 1719) on :
[QUOTE]Originally posted by free2reckon:
Posted by free2reckon (Member # 4563) on :
Day 10, page 10....I'm happy to report that I continue to sleep well and my experience with the Marshall protocol is continuing to improve. All of my symptoms are resolving.
Posted by free2reckon (Member # 4563) on :
Nelly, I've apologized for my aggressive tone...how about you stepping up to the plate?
Posted by nellypointis (Member # 1719) on :
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?
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.
Posted by TX Lyme Mom (Member # 3162) on :
I wish I had posted this idea yesterday (or the day before perhaps), but this topic has become so popular that I worry about folks who do NOT have high speed internet access -- about whether their computers can download such a lengthy topic very easily. I worry that they might be starting to get left out of this discussion.
Posted by free2reckon (Member # 4563) on :
Good idea TXLM....part II it is...
Posted by una (Member # 2603) on :
Click here for Part II
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