[This message has been edited by free2reckon (edited 13 May 2004).]
 

At this point in time, assuming that many or most LLMDs are not yet using the Marshall protocol, where can we get screened for markers like IL-4? Through an immunologist?

Thanks,

Sue

BTW, I also notice that I don't get viral infections anymore.
 

Hopefully, you can still edit your last post under that topic, though, in order to include the link to this new, continued topic discussion.

Otherwise, as soon as that older topic is no longer on page 1, then folks might have trouble finding it (for the sake of review) unless both topics are "inter-linked".

Please go back and add this link to your last post there. Thanks.
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

Just wanted to say that in the CFS community, it's extremely common for people to report that they never get "sick". As in viruses and flus. I used to have continuous colds and upper respiratory problems my entire young life. Then I got the sinus infection from hell, and didn't have another cold for at least 10 years. It's not an urban legend. It doesn't apply to every single PWC, but it's the norm, not the exception.

I hadn't had a cold in years until going on serious antibiotic therapy. That's when I developed a pretty good one. Actually started turning to bronchitis, but i.v. antibiotics aborted that.

Bacteria are antimicrobial. Their toxins are deadly. It's possible that the bacteria's toxins keep the viruses at bay, just as some viruses are known to kill bacteria (phage therapy).

penny
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

Here is the 10 pager:
http://flash.lymenet.org/ubb/Forum1/HTML/024816.html

Ann - OH
 

I KNOW that it is being said and repeated oft times on CFS lists (I've been there for long enough, and FYI Penny, I was among the very first to bring forth the notion of infectious illnesses in CFS, and to insist Lyme might also be a major player in our illness).

But I don't think we have enough (any?) evidence to prove that PWCFS/Lyme don't get viral infections. If I go by the people I know of, correspond with or know personally, this is certainly NOT TRUE, in fact the exact opposite, so could we hold back from making sweeping statements?

Are we happy to theorise that INF-gamma is high in Lymies?

Are we happy to accept as proof of this that we don't catch viral infections (since blood levels are not a good indication)?

Are we then happy to say that since we have high INF-gamma it is causing all these deleterious futile cytokine cascades and that by taking Benicar our immune systems will recover and rid us of bacteria?

Are we happy that Benicar does not carry any risks, especially for the ones like myself who DO get more than their fair share of viral infections?

Don't want to rain on anybody's party, just want to make sure we don't venture into potentially hazardous txs, at least for some of us, (albeit a minority, but I'm not sure).

Nelly
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

There are many different disorders of the immune system. I'm no expert but I have been diagnosed with one myself.

I have noticed for a long time that I simply do not suffer from a recurring virus that used to give me fits, and from the viruses du jour that make their way around the office. Nevertheless, one of the first symptoms I had when I got ill, a year before my lyme was diagnosed, was a high EBV titer.

I don't know what to make of it, but I approach this with the understanding that there are individual differences in immune function, some baseline and some mediated by disease.

Personally, I would want an assessment of how MY immune system is malfunctioning and if that would make me a good candidate for improvement before I would embark on a protocol like this.

This is what I would recommend everyone do. The protocol may be great for some, and harmful for others.

Sue
 

My question is, will he need to really test me for anything before starting me on Benacar and Minocycline?

I am confident that he will "ao along" with me on this as I haven't gotten any relief from my pain even after 2.5 years of aggressive treatment with him and then with Dr. C. I canceled my appt with Dr. C for later in the month and plan to see him after I have been doing this for at least 2 months.

I'm not avoiding Dr. C on this, it's just with Physical Therapy I am doing to recover from my surgery to repair my rotatar cuff and the fact that my wedding is in June, I jsut can't get away for my May appointment and will reschedule for later in July or early August.

Thanks for your reply and thanks for bring this to our attention.

Rosemary
 

I'm your classic CFSer. Nothing abnormal at all on standard testing until my thyroid was finally diagnosed as malfunctiong (about 10 years after I told them it was.
:-)

Oh, and of course, then, based on my own persistence (mainly because I felt like I was dying but didn't look like it and no one took me seriously), they found bacteria in my jaw bone that "doesn't belong there" and then in looking at that, they found seriously "diseased" sinuses on CT scans (infected and full of gunk) even though I have no sinus symptoms. (makes you wonder what else is infected that's not obvious). Not to mention, the only time I feel better is when I'm on antibiotics. Yeah, nothing wrong with me. I'm just lazy. :-)

penny

Marshall does recommend testing the D-metabolites before starting benicar.How does Doctor measure my ACE, and my D-metabolites?

The level and the ratio of the two D levels gives an idea of how high the inflammation is, and how severe the herx is likely to be. Because they are not interpreted the same way the labs do, you might want to post on sarcinfo when you get your results, and get Marshall's feedback.

Also, the benicar lowers the level of 1,25-D, which is a hormone with multiple effects. If your levels are very high, and the benicar lowers it rapidly, you can get effects from that. Knowing what your levels are helps to anticipate what the response will be.

I highly recommend you read at least this paper: SarcInfo.com: Frequently-Asked-Questions.

You should aslo read the protocol paper. Marshall recommends that you be on the benicar for a week or two before starting the mino, so that the inflammatory blockaid is in place.
How to Start the Marshall Protocol

I got my D metabolites tested yesterday, am waiting to see how they come out.
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

I think you are correct that, even if cytokines are causing most of our symptoms, that we all do not have the same cytokine cascades. Here is a quote Dr. Rosenbaum:

"Now to the problem with testing patients with Chronic Fatigue Syndrome. I wish that all the results were consistent, and that it would be easy to determine what is wrong in this disease; but it is not. The immune test results of these patients are not consistent; they are often contradictory."
http://www.findarticles.com/cf_dls/m0ISW/243/109946539/p1/article.jhtml

There is some more interesting immune info on this site.

Maybe I am still not getting it, but I think there are probably not only different triggers, but different pathways for cytokine cascades.

With that said, I think a trial of Benicar may not be a bad idea (one has to decide the risks for themselves of course), unless we start hearing some bad reports.

BTW, just for the record I never get colds/flu. I guess that is my consolation prize.
 

Now I see there is another test(sil2R) that should be done with Marshalls protocol...May I recommend that you post ALL of the tests he uses to determine his protocol...

So that people have all the info before going to their docs....

I just got back from seeing my doc and ordering the tests and now find there is another test...frustrating...

Byron
 

penny
 

Current treatment
600mgs Rulid & 2 Bactrim
day 12 of protocol

Status
Year 4.5 of lyme
CNS Symptoms and severe body, muscle aches & burnings
bright red flush..looks like I have been at the beach, I wish!

I hope this helps. My wife has it too. If this helps me, she will start as well.

Best

 

Current treatment
600mgs Rulid & 2 Bactrim
day 12 of protocol

Status
Year 4.5 of lyme
CNS Symptoms and severe body, muscle aches & burnings
bright red flush..looks like I have been at the beach, I wish!

I hope this helps. My wife has it too. If this helps me, she will start as well.

Best

 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

I went to my PCP armed with the protocol and printed out your response. He became very excited that there was a possibility for me to get some sleep, feel less pain and start the killing process, again, only this time it could possibly be effective in my treatment.

His only concern was about my low blood pressure and I have an arm pressure kit and will be checking it daily.

I have now decided since it's been almost 2 years since my last Igenex test, that I'll come into the office on Monday and have my blood drawn and will be sending it out to Igenex.

I am very curious as to just what Igenex will find after my 20 months of extensive abx of many, many kinds. I still say that we were wrong to start off with the IV Rocephin and had I seen Dr. C during that time, I would not have been put on IV.

But, my PCP was ignorant (that is different from being stupid as I see the two terms have been used here and they are not the one and the same) to the fact that Rocephin should not have been the first drug. I will see him, again, in two weeks.

I consider the doing the Rocephin before any orals a BIG mistake and I believe soon many others will believe this too. Experience is the teacher.

*****Took my first 40mg pill of Benicar yesterday at 4:00pm when I got out of the docs office. This was the first night in over 4 years that I didn't get out of the bed....I actually slept from 10:30pm till 4:00am. That was the most I've slept in any given night with the exception of the night of my surgery....those were really good drugs they gave me then.

I will be starting Minocycline next week. OOooo back to no carbs. Wouldn't want yeast on my honeymoon now will I?

My major concern is the {{{pain}}}. I did still wake up with the same pain. How long into this do you think the pain will slide the other way? What was your pain level? Mine has stayed at about 7.7-8 all day, all night, every 24 hours, seeming like forever.

Sunday was my last day on a Durgesic patch...I've been on them all the way up to 100mg since December. I am so proud of myself being able to down-ramp the Durgesic as it was not pretty getting off. Now if this can get me off the hydrocodone I'll be a very happy camper.

That is why I have missed a lot of these posts and, still, haven't caught up as of yet.

Your pain level may be less and therefore the Benicar worked very quickly for that. I don't know.

What I do know is, we really need to keep this thread open for those who are wanting to do this and those who are doing this. As with everything else, I am not emailing this, for just how does the private emailing help anyone else. Important information is lost forever when people privately email things that will benefit the group as a whole. This is my opinion.

Anyway I want to thank you, again, for all the time you've taken to bring this to the groups attention!!!!

Rosemary (who DID get a good night's sleep last night!!!!!!!) Thank you, thank you, thank you...
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

The sleep's amazing isn't it? I've had a great night's sleep every night since starting the Benicar. As a matter of fact, I OVER slept this morning! Which I never do. So my benicar dose was an hour late.

The pain for me continues to get better. Before, every step or turn caused something to hurt somewhere. Now I'm finding that I may have a pain in my hip, but it's not as bad, and seems to migrate somewhere else fairly quickly. The everywhere pain I did have is no longer there. So I hope less pain becomes true for you too. I also really like the relaxed feeling I have in my shoulders and neck, compared to how they've always felt, which was tight and sore and very tense. Now it's so much less, and the shoulder pain is greatly reducing as well. I can also distinguish where those knots in my back are, whereas before, it was just all over tension to me.

The only thing I'm not having any luck with yet is the fatigue. I feel tired. Whether that's the Benicar or because I stopped the Minocin, I don't know. Usually, the abx give me energy, so I'm looking forward to starting it again.

My blood pressure monitor will not register my upper reading. The bottom number's okay. But that's something that happens to me all the time at the doctor's office, too. So not sure what to do about that. I had one day with some slight wooziness, but that seems to have passed. The only thing I really wish would improve is the fatigue. But maybe that's going to take a while longer, or need the addition of the minocin.

penny

[This message has been edited by free2reckon (edited 13 May 2004).]
 

again, thanks,

Rosemary
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

So now that it is later, I was wondering if you'd heard anything more about that.
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

thanks for the link. Yes, there's a LOT out there. Looks like ARBs are going to be getting a lot of attention, as they seem to have an impact on a lot more than blood pressure. From what I understand, Benicar was developed by the Japanese, who are known for their ability to perfect upon things. Perhaps this explains why Benicar seems to work so much better than the other ARBs that came before it?

I was really interested to read one abstract that showed that mice who are bred with no immune systems have absolutely zero response to antibiotics. This shows how our immune system has to be functioning optimally for the abx to help.

penny
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

I see him Mid-May..my son is on IV after very severe brain infection, as well as Bartonella and Mycoplasma..he has experienced significant overall improvement, my guess is he is at about 65%, comparitavely to his worst state being a true zero.

He's on IV plus high doses of Mino, Rifampin and Plaquanil. Multiple supps, plus CoQ10 and magnesiun malate.

I am going to be ready to have a conversation with him about it then..though my son may not be ready to reduce his regimen, tough call, but still..

Oftentimes we talk about things that turn out to be appropriate for adults, not kids..ect (we discuss my case as well)..so I hope he'll have input on the theory, whether or not this is a good thing to consider for Ryan in particular at this time.

He is extremely busy, with literally thousands of kids under his care..and I know he sometimes can't get to the info sent him.

I will use part of our time with him to discuss..gotta do my homework.

Mo

[This message has been edited by Mo (edited 07 May 2004).]
 

Similarly to what you're doing, though..he is a medical maverick and stays focussed on the problem, with no disctractions from the task at hand or outside pressures...

Thank God.

If this makes sence to him, he'll likely respond as to how and if it can apply in kids or adults.

Mo

[This message has been edited by free2reckon (edited 13 May 2004).]
 

[This message has been edited by lymewarrior03 (edited 08 May 2004).]
 

I say this because I've been spending hours and hours looking at the materials at those two websites this whole week. There's a ton of material to become familiar with.

Frankly, if our LLMD were to jump into this withOUT taking plenty of time to study and learn about it first, then I wouldn't have much confidence in it myself.

Try not to be too impatient. I know that's hard when you aren't feeling well right now. "Yesterday isn't soon enough" whenever you are feeling so ill. But good things are worth waiting for.
 

[This message has been edited by lymewarrior03 (edited 08 May 2004).]

[This message has been edited by lymewarrior03 (edited 08 May 2004).]
 

I have some empathy for them. Also feel a lot of frustration with the doctors who're just punching the time clock. And there are a lot of those out there too. I think they've deadened their emotions. I've always thought being a doctor would have to be one of the worst jobs on the planet.

penny
 

When my friend, who's been his patient for years, and whose family business referred many many patients to him, told him her family could no way afford this retainer fee, he got upset and asked her if she thought it was about the money. She thought about it for a moment, and said, what else am I supposed to think? That's when he started swearing at her and told her to get out of his *effing* office!

This doctor also has CFS/FMS himself. No clue how to cure himself. Maybe he's got lyme too. Sounds like he's experiencing some "lyme rage" himself.

Kind of scary, putting our lives in the hands of people like this.

penny
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

For your information, my doctor, and at least three other ILADS doctors have read this info. They need more proof...better studies...or should I say..ANY study conducted in a strict, double blinded, placebo driven, strictly controlled environment... A NON-ANECDOTAL STUDY!!!!

You have absolutely NOTHING but theories and you have the nerve to blast concerned, responsible professionals, who work with HUMAN LYME DISEASE...(the human body IS different in MANY ways from your animal friends,)for not responding to YOU??? Who the hell are you? DO you know how many of these "CURES" these doctors have seen over the years, only to be greatly disappointed? How long have you had Lyme? People I know have had it as long as 54, yes, 54 years!!!!

Yet, you in your self rightous, rude and pushy manner, put people down for being cautious with their treatments, and the treatments of others????

Do us all a favor...you have given us the info. Sit back, if you can stand not grandstanding and pushing people around, and WAIT TO SEE THE RESULTS.

You, by you own admission have an extremely light case...this means NOTHING to people who have suffered greatly for years.

Penny, bless her heart...by her own admission, does not have Lyme.

So...where are all the people who have been greatly helped???

By the way...Benicar is NOT producing a herx when it is first started, because it, like most other High Blood Pressure Medications, make EVERYONE fatigued, dizzy,weak, etc. even if the user has NO infections...

ASK A PHARMACIST FOR TRUTH!!!! Stop spreading misinformation. I am NOT herxing...I can read the literature that comes with the medication, and YES, I have the ability to call a real expert in medicine, a Pharmacologist that works for Sankyo...the makers of Benicar.

Norvasc, and other blood pressure meds produce the same symptoms in otherwise healthy people...these are NOT HERX REACTIONS!

Are you an MD??? How are you diagnosing people if you are not? How are you and Marshall recommending various dosages if you are not an MD???

Your ego is the problem here...you delight in having ten page on your post, mostly replies from you, and then you ignore valid concerns and call people ignorant and stupid!!!

You have no credibility as a doctor..as you try to be.

The best thing to do now, is simple: Wait and see what happens, if your ego can let you.

NEVER, I MEAN NEVER treat your animals as badly as you do some of the people here.

I know PLENTY of Veterinarians who would never dream of trying to give medical advice to people...it is unethical and illegal.

AS I stated before...I am trying this because I have nothing better to do...I really don't care. But I will never recommend something that has not been clinically studied...(as some of our LLMD's are doing now with other protocols,) to anyone I cared about...unless my self importance and having a dubious "CURE" were important for me to announce to the world, as you did on your first post. Good move.

Skeptical? Damm right. Looking out for number one...and all my friends. Be careful out there friends...no everything is as it seems...there is always another side...look for it.

JRW
 

No, this is not what I said. Are you a doctor? I've been told by some doctors that I probably do have lyme. And the lyme community loves to tell CFS patients that they have undiagnosed lyme. As you well know, it's not an easy diagnosis to make. There are as many false positives as there are false negatives. So who can be sure? It ultimately comes down to a doctor's interpretation of a number of factors. And I'm not inclined to spend $1,000 of my own money in more tests to TRY to prove something that doesn't get me closer to being well.

I already know I've got a difficult to treat bacterial infection. I think that we're all dealing with a pathogenic illness, and that it's more likely to be a number of different bacterial infections, co-infections, etc. that are causing the similarity in our symptoms. I can't even kill the organisms I know I do have, so I don't really care which other organisms I have unless that's going to help me know how to get rid of them, and so far, that hasn't turned out to be the case with Lyme. I know that there are many organisms besides lyme which are just as difficult to eradicate. I know that I've got an infection, and that I want to get well. I want us all to get well. That's my focus.

penny
 

Starting a protocol like Marshalls in the middle of intensive antibiotic therapy with out proper studies could be risky. These doctors are already risking their liscenses as it is. I would expect a significant amount of time to pass before they would consider adopting it as a whole.

If you want to be a test case the more power to you. I for one have talked to two of my doctors that did take the time to look at the information, both who said that in theory it might just work but they did not feel comfortable without proper testing.

I have to say anyone advocating Benicar for children out of the box with no testing is acting irresponsibly, and that on its own would make me feel uncomfortable about the research.

Personally, I would rather see anyone using Marshall's plan stay away from the ILADS doctors for the time being so as not to create any more conterversy, until such a time this medication is approved for use in treating Lyme and other infections.

There is alot of research as of late that I think in a few years will greatly help us. I do think Marshall has contributed some valuable research, but others are doing the same.
 

My wife and I have seen 4 leading LLMD's over the past 5 years....with minor success. There is NO ANSWER...what???...NO ANSWER..Huh?
That;s the truth...we need to explore every option and make mature decisions. Even Dr F said it is experimentation at this point.

So hooray Scott, Trevor, SkyKing.. everybody who cares enough to post their ideas on this forum. Marshall's protocol is probably the first new idea that we have heard in the 5 years we have been visiting the forum. Decide for yourselves!

I am on day 2 of Benicar..still fatigued by it . If the fatigue does not lift, I will have to stop. I am also rifing every 10 days as per Skyking and will restart rulid-bactrim tomorrow...

I appreciate and applaud any new idea!!

Thanks,

Bill

[This message has been edited by lymewarrior03 (edited 08 May 2004).]
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

And as, JRW, hwlatin and others said we only have very scant annecdotal evidence from people with a dx of sarc on Trevor Marshall's site.

We know that help will not come from some undiscovered-by-the-Westerb-World-yet-fully-proven-and-undisputable-study. We,unfortunately, are at the forefront of what is happening in the tx of these complex infections, so we know and accept that we have to consider and try out things that are based on theories, not proven facts.

But we have to use our best judgements to decide what is even worth trying. I am not qualified enough to assess whether Trevor Marshall's theory will be helpful to us, so I have to use other clues to decide if there is any reason to get even a bit enthused.

One of these "other ways" is trying to get a feel for whether there is "internal logic' in the theory, as far as I can tell of course.

Another way is to try and assess whether I think the person presenting the theory is trying to benefit from what s/he is pushing, through money or ego.

Last but not least, I try to decide what my gut feeling is twrds the person, using indirect clues. It's a bit harder for me because I am French so I often have knee jerk reactions which come from a cultural bias, I keep having to try and adjust to corresponding with Americans.

FWIW, I am concerned with Scott's "I have a mission" attitude and even more with his "get out of the way if you are too ignorant to understand what I am saying". I am also concerned with his "I was already 85% better now after a few days on Benicar I'm 90% better".

BUT, as I said before I read Marshall's site ages ago and I am interested.

BTW, I never got the impression that Marshall himself was claiming that Benicar was a cure-all.

BBTW is Marshall Australian?

Nelly
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

It was the first time I really realized how bad the situation was. There could come a day that my sons and I might be denied care. It is as much our responsibility to insure the protection of our doctors as they are.

If you are unhappy in the way they respond then move on, find someone else to treat you. We have all done that a number of times. This group of LLMD's have done alot to help us. They might not be perfect, nobody is, and they are helping us in the best way that I can. I can tell you experimentation can lead to death, it almost did in my case. Caution is the prudent word.
 

I meant they don't recognize the value of Marshall's work...I didn't mean they don't take Lyme disease seriously.

quote:

---

Originally posted by free2reckon:
I am a little disappointed in your skepticism of my opinion, it confuses me, but I do respect it.

---

Scott,
I respect your opinion very, very much. However, our daughter was undiagnosed for 2.5 decades, since early childhood. I had to learn to be very resourceful and to figure things out for myself. Consequently, I have always regarded all of our medical consultants as advisors -- out of necessity.

If I had not gone to the effort to do my own research, I doubt that she would have survived long enough to have finally been diagnosed properly with LD -- seriously. I honestly don't think that she would have survived this long. We had to pick our own path very, very cautiously for many long years, without much medical help at all, and in spite of a lot of misleading, bad medical advice.

You will be glad to know that she, too, is reading and studying all of your topics, but she doesn't have high speed internet access, so it's harder for her to keep up with it as easily as I can. She is planning to come here to visit next week, just so that we can spend some time together at the medical library collecting as many of the complete articles as we can find there from some of the better abstracts which we've been discovering, thanks to Your valuable help.

I had found the sarcinfo-dot-com website a long time ago, even before Barb (bpeck) first posted about it here at LymeNet. Alan Cantwell had sent me info about it when he first published his article there. I failed to appreciate it back then though. I also failed to appreciate the sarcinfo website when Barb first pointed it out to us, too.

Only because of YOU, am I now taking the time to delve into all of this mind-boggling material. Until now, I couldn't see how it might relate to our daughter's problem enough to warrant spending the necessary amount of time to learn about it.

We have always been ultra-conservative about jumping into anything new therapy until we have researched it for ourselves very thoroughly.

I am glad that you consider the sartan family of drugs to have such a good track record of safety. That's VERY reassuring and encouraging!

Furthermore, I agree with you that even if there are risks to Benicar, that one must weigh those risks against the status quo antibiotic protocols and also against all of the other alternative natural therapies. Right now, Benicar is at the top of our list of potential therapies under consideration to pursue next.

Please try to understand that most of the "contrarians" here at LymeNet have had similar experiences to ours. That's why we are all so wary of becoming too hopeful about any new, unproven therapy protocol, no matter how good the theoretical basis for it might appear to be.

It might help you to understand our psyche a little better if you think of all of us as frightened, hurt animals who are likely to try to bite the hand that feeds us. We're just scared of being hurt again, by getting our hopes up and trusting blindly in something which we don't fully comprehend, that's all.

Thanks again for taking so much of your valuable time to try to help us.

PS - For folks who might want to find the other related topic posted by Free2Reckon which I mentioned above (ie., Pathogenesis of Borrelia), here's the link to it:

http://flash.lymenet.org/ubb/Forum1/HTML/024997.html

[This message has been edited by free2reckon (edited 13 May 2004).]
 

Response: I never said that they have to practice Marshall's protocol it in 24 hours...I just think they should be investigating it and asking questions...which they don't appear to be doing. As I've said before, I fear they are not recognizing the value in Marshall's work. Most MDs don't have a strong background in immunology as I do, their ignorance regarding the pathogenesis of this disease causes them not to appreciate this breakthrough work.

A. I am sure some of them are studying it. Just because they are not coming to the same conclusions does not mean they are incompentent. Alot of doctors dont have an education in nutrition either and have difficulty in reading CBC's. This includes imunologist too. So what is your point. They all have to work together. I have been told Marshall is very head strong, maybe that is why this might be difficult.

R: Marshall's protocol doesn't call for Benicar therapy to be added to intesive abx tx...it recommends withdrawing abx therapy prior to Benicar tx.

A: It means flushing the current antibiotics out of your system. This could take up to 72 hours. What would the impact be then.

R: A very significant amount of time is what most will likely get!

A: While none of us like to be sick, time is not necessarily a bad thing. Time might be the difference between life and death in both directions.

R: Didn't you give them Marshall's work showing that the testing has already been done?

A: Your assumption is that everyone that questions the plan did not read the plan. That is absolutly false. The test group is too small and does not reflect enough diversity. It would never pass mustard with the FDA.

R: Children have already used Benicar therapy for sarcoidosis with wonderful results.

A: And that is a big risk. Pediatrics is a whole different ballgame. I would bet the manufacturer would not want that to be done. It opens them up to alot of risk.

R: So, you are saying that when all of the testimonials begin to roll in about the benefits of Benicar, you'll wait for years until the clinical studies by Sanyko are finished, allowing them to market Benicar as a treatment for chronic Lyme disease, before you'll begin Benicar therapy?

..mean while many LLMDs and other MDs will have been using Benicar and you'll still wait for the FDA approval for this claim?

A: I might not wait for FDA approval, before I would start using it, but I would want to see more sucess stories from different types of cases to be sure of its safety. Trust me when I say this, I hope it does work. I would like nothing better than to see the suffering to stop. I just dont want to see anyone hurt in the mean time. I think we all know about that all to well.

R: Not nearly as important as Marshall's work...it's a major breakthrough!

A: Clearly you have not read other researh studies. Marshall is not the only one going down this path.

I am concerned about this thread. New people to Lymenet might not understand the risks associated with any of these plans. I really do have a hard time believing your statements about the progress you have made. Your's and penny's statements are over the top and that concerns me.

As I said earlier, I nearly died from using medication for purposes other that what it was meant for. The doctor at the time, was much like you, sounds good lets try it. I feel that it is important that people be made aware of all of the risks, and I will continue to make that point.

It's not unusual for things to catch on slowly. The other Marshall, who went to the same school that Trevor did, who discoverd the bacterial cause of ulcers had a horrible time getting people to listen as I'm sure you know. He had to infect himself to get people's attention.

And what's crazy is that even today, all these years later, it's still more common for doctors to prescribe Tagement than it is to prescribe antibiotics for ulcers.

It takes time. You're breaking ground. What I like about the internet is that word spreads fast, and doctors can't ignore things the way they used to. So I think we've just got to be patient, but persistent. Also think it's great that you're broadcasting this as widely as you are with the energy you have, because it gets noticed. You'll get criticism for that, but so did the ulcer Marshall. So does anybody who stands out from the crowd. I do believe this is a breakthrough that deserves a look. Try not to be upset if others don't see it that way. Everybody's different. Some people are cautious, some people jump right in. I learned from having a very smart, but very cautious child, that pushing them doesn't help. They've got to observe, then decide on their own when to participate.

I know of a number of doctors who are very interested and intrigued. And they're not lyme specialists. They're gps, internists, immunologists, and infectious disease docs. I've got a number of friends who are going to start the protocol, for the same reason I did. There are aspects of this treatment that perfectly address their own illnesses. If this really works, the medical community will take notice because it's easy and it's inexpensive for people to start getting well. Just like the ulcers folks. And doctors could feel successful that they're helping patients. The smart docs will catch on. And because of the internet, when people hear other people are getting better, they'll find the doctors who'll help them.

penny

p.s. I find it interesting that both Marshall's are Australian. And that some of the best work about bacterial illnesses comes out of Australia. I also find it interesting that the Japanes know more about toxins than anyone else. So even though this is completely irrelevant, I think it's fitting that Benicar was created by the Japanese, and the protocol designed by an Australian. :-)
 

I swear that I am reporting my experiences with Benicar exactly as they are occurring. The good and the bad.

I've reported the pain relief, the fatigue, the heart kerthumping, the feeling of depressurization in my head, and relaxing throughout my entire body and brain, and improvd mood. And now the itching that started last night, and the improved energy I feel this morning. This is all the truth.

I'm honestly reporting how I feel. The only other time I've had such noticeable, immediate results was when I started antibiotics. It was life changing. But didn't last forever, and the antibiotics were hard on me. This definitely feels life changing. Even more so than the antibiotics did, but time will tell whether it lasts.

penny
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

1) Scott, you are not being realistic. You just started benicar 9 days ago, and a few others are trying it. You need to focus on the important, not the urgent. The urgent is "right now! right now!" The important is, this theory looks very good to you, so let some lymies try it out and see what happens. Anecdotal reports will cluster on a bellcurve in a way that will either be convincing or not. You cannot expect all the doctors to instantly jump on this protocol. It's just not reasonable, and you are stressing yourself out for no reason, and getting frustrated for no reason. Be glad you feel better. You are not responsible for the entire lyme community, anyway. Your only responsibility is to put out the information, to say something helped you and why you believe it helped. Those who are interested will pursue it, those who don't, won't. Everyone has a right to their own lives and decisions in their own time. I learned this with my mild hyperbaric chamber. I still post about it sometimes. But I hit a wall because of the (I am certain incorrect) standard response from all the $-making multichamber centers/doctors that only 2.4 ata will work. If someone gets interested in mild hyperbaric, and they check with a clinic/doc who has a chamber, they are talked out of it. They don't think for themselves. They could at the very least hugely improve their quality of life. Well, they are not my responsibility. I offer the information, and those who follow up on it--there isn't a person on our lyme/mild hyperbaric list who doesn't report in amazement about the immediate improvements they see with the home chamber. I could rant against the doctors who block this information with their "lies" that they believe--but really, who cares? God helps those who help themselves, as the old cliche goes.

Calm down. You have sounded a bit manic lately--manically happy, and now manically angry. Rome was not built in a day...

I am editing this to add in that I think you have done a very good job of getting the information out, and now you have to wait for the seedlings to grow into plants and then trees--if they are meant to.

[This message has been edited by jen13 (edited 08 May 2004).]
 

Nelly: The French are like everyone else ie ethnocentric, they have been conditioned by their culture to interpret certain signs through their own cultural filters. Being aware of this doesn't make one immune to it. This is why I mentioned it, but you prbbly do not have the "necessary background" to understand these things

Scott: Haven't you read Marshall's publications either?

Nelly: Scott, I have read all of them, but how must I say it for you to understand what I am saying? I know what he has written, I know it SOUNDS INTERESTING but does it make it "TRUE"? (I am using a word you seem to have a particular fondness for. That's all.

Scott: "I am qualified to determine if Marshall's work is worthy or not, but you and others critisize me for doing so.

Nelly: No, Scott, for being too easily convinced! I can't pass any judgements on the value of the Marshall Protocol for Lyme but I can tell you are making sweeping statements with very little data to back it up.

Scott: What indirect clues?
See just above, how rigorous a person is in their thinking.

We would all like to be bushy-tailed and fancy-free but...

Scott: I've worked hard to explain thing in simple and concise ways...if folks have questions I address them the best I can...

READ MY LIPS: we UNDERSTAND we are just NOT SURE you have enough EVIDENCE to be so affirmative, hence the VOLUME of posts on your threads!

Nelly

[This message has been edited by nellypointis (edited 04 August 2004).]
 

quote:

---

Originally posted by nellypointis:
Trevor: Nelly, I always was under the impression that the French were open-minded to new ideas...or is it that they are contrary to anything American?

Nelly: The French are like everyone else ie ethnocentric, they have been conditioned by their culture to interpret certain signs through their own cultural filters. Being aware of this doesn't make one immune to it. This is why I mentioned it, but you prbbly do not have the "necessary background" to understand these things

Trevor: Haven't you read Marshall's publications either?

Nelly: Trevor, I have read all of them, but how must I say it for you to understand what I am saying? I know what he has written, I know it SOUNDS INTERESTING but does it make it "TRUE"? (I am using a word you seem to have a particular fondness for. That's all.

Trevor: "I am qualified to determine if Marshall's work is worthy or not, but you and others critisize me for doing so.

Nelly: No, Trevor, for being too easily convinced! I can't pass any judgements on the value of the Marshall Protocol for Lyme but I can tell you are making sweeping statements with very little data to back it up.

Trevor: What indirect clues?
See just above, how rigorous a person is in their thinking.

We would all like to be bushy-tailed and fancy-free but...

Trevor: I've worked hard to explain thing in simple and concise ways...if folks have questions I address them the best I can...

READ MY LIPS: we UNDERSTAND we are just NOT SURE you have enough EVIDENCE to be so affirmative, hence the VOLUME of posts on your threads!

Nelly

---

Dr. Scott Taylor is the first Lymie I had contact with after I recieved my Lyme diagnosis last year. I have gotten to know him through his helpful emails, the support group in his town, and more recently the support group in my town which I started a few months ago.

Those of us that know him, including us on our Lyme Disease Association Board, cannot believe how truly fortunate we are to have Dr. Taylor in our little corner of the world. We are in awe of his intelligence.

He travels anywhere when asked to speak on Lyme Disease-on his own time with absolutely no compensation. He works tirelessly and relentlessly with unbelievable conviction educating, researching and helping people with Lyme. He is one of the most selfless and dedicated humanitatians we have had the pleasure and good fortune to know.

Why does he do this? He certainly doesn't have to! Others feeling as well as he is now would go forward with their life. He has made countless personal sacrifices in our behalf. The reason he does this really IS just pure and simple: he knows this is his mission.

Another advantage to having Dr. Taylor in our Lyme world besides his vast knowledge of the immune system and microbiology-something that practicing physicians, Lyme literate or not don't have-IS the time to research and the diseased body to actually TRY the treatment.

All of his effort is for all of YOU out there! He gains nothing except the satisfaction of helping others to help themselves to feel better and have a better quality of life. He deserves your respect-which is something he has earned from all of us that know him personally.

Thank you, Scott!!!!

------------------

 

Thank you for taking the time to give us benefit of your personal acquaintance with Dr. Taylor. It is much appreciated.

I also would like to suggest for LymeNet members who want more in-depth answers to other specific questions regarding the Marshall Protocol with Benicar that they visit the SarcInfo Phorum and view the list of current topic discussions there. It's a very valuable resource. Here's the link to their webpage.

http://sarcinfo.com/phorum/list.php?f=1

 

You know, the people I know who've really helped make a difference are always really passionate about what they're doing. Very single minded and driven.

Sometimes their passion rubs people the wrong way, but without them, we wouldn't benefit from their single minded efforts.

I'm willing to put up with a little strong headedness (not meaning you in particular, Scott) if the dedication and passion they have can potentially pay off for a large number of people.

Two of my dear friends are going to start the protocol next week. They've been monitoring my progress and even called Trevor this morning.

We've all got slightly different manifestations of our illness, but the protocol makes sense to all of us.

We are all so excited that maybe finally we're going to be heading toward a cure. Or at the very least, some major symptom relief and the ability to resume some kind of normal life.

Two of us are going in on Monday to sit down with our Doctor and really spell this out for him, give him Trevor's number so that he can talk with him doctor to doctor.

Scott, I am so grateful to you for telling me about this. If my daughter benefits, you will be my hero forever.

penny
 

Is he applying for a job or smthng? Your post sounds like a personal reference!!

The point is not about Scott or about how dedicated he is, it's about whether the Marshall Protocol is

a)safe for us chronic Lymies (some with very low BP) to try

b) effective in the powerful ways that Scott makes it out to be, with so much certainty

c) potentially deleterious to people who might not have the immune dysregulations Scott believes we all have (Th1 dominant)

I am not saying Benicar = no potential, I am saying Benicar, let's talk about it, let some people try it (those with high BP for eg) and let's gather more opinions before making claims

I am not writing to split hairs, I just don't want us to get into something without having investigated it sufficiently.

I am very grateful for the people like JR and Penny (and Scott!) for testing it out for us. And to reply to one of Trevor's questions to JR: testing something is not necessarily taking position for the product.

That's all, folks!

Nelly

But what I am now seeing is starting to sicken me. We have people poping up whether real or ficticious atesting for Scott's qualifications. I really dont think that is in debate. What I find real offensive it the hype that is being displayed.

It is one thing to disseminate information to educate the masses. It is another thing to bully people into believing it is something more than it really is. Marshalls work should be able to stand on its own. For the most part I think it does. It is good work.

But Marshall is not God and Scott and Penny you are not prophets. I respect what you are trying to do. It is important that we have discussions on this board like this, but calling people single minded, slow, incompetent just because they dont bow down to the plan is uncalled for.

There have been many people including myself that have shared treatments that have worked for them on here. Most are able to do it in such a fashion that it becomes valuable information. We now have 12 topics on this subject matter spread out on this board, I am not sure how valuable it will be.

I'm not sure if you were referring to me and the use of the word "single minded". I used that word in a good way, not a negative.

I'm not really sure why you're projecting certain positions and beliefs onto me or suggesting that I have strange motives. I'm not trying to be a propet. I'm sharing my experience as honestly as I can, and can't help but share my enthusiasm when discussing it with people who seem interested. I've posted the same thing on other forums, and have gotten much less interest.

I don't have to post, especially if no one wants to talk about it. Believe me, there are more productive things I could be doing right now.

penny
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

[This message has been edited by jseaton357 (edited 08 May 2004).]
 

[This message has been edited by robi (edited 08 May 2004).]
 

Maybe it would be more useful to discuss the ideas and reactions in the medical world without being judgemental.

[This message has been edited by lymewarrior03 (edited 08 May 2004).]
 

Thank you both for exposing me to Marshall's work. I've been so busy with other things that I've been unable to be on Lymenet while this was becoming a hot topic.

This is the most exciting thing I've read in years! Thank you for your patient tutorials and open discussion. So often the really interesting topics such as this are not on the public forums.

The science sure seems to be there. Of course, I'm the slow type who likes to read and fully synthesize things for myself. I've found your explanations and tutorials very helpful in doing so.

BTW Scott, I owe you thanks for a journal article that you passed along to me a while back. It was something I had been trying to get my hands on. I can't begin to tell you how very helpful that was.

Like many of you, I become pretty single minded when I find something this interesting. It is a trait I admire.

I can't imagine life without a passionate interest in something - for me, it has always been knowledge, understanding and answers. This does look very promising and I find your passion to be very contagious.
 

[QUOTE]Originally posted by nellypointis:
[B]What bothered me right from the start, is the slightly "manic' tone of Scott's posts.

If you aren't passionate when you believe in something then you will never do much good with it. That stuff about being "manic" is absurd.

A very wise friend of mine often says
"You can always spot the pioneers - they are the ones with the arrows in their backs"

Thank God for our pioneers. Were would we be without them?

It's a tough job but someone's got to do it. Thanks!!!! -tami

quote:

---

Originally posted by robi:
So Jason did the drug you got excited about 5 years ago have lasting effects? what happened?

---

Please note that corticosteroids or prednisone other steroids such as dexamethasone can inhibit the inflammatory cascade we are dealing with. However, remember that the steroids are potent immuno-suppressive agents, which reduces the immunes systems ability to defend itself against our pathogen.

One of the major advantages of Benicar, is that it reduces inflammation and enhances the immunes systems ability to fight infection...not suppress it.

Steroids can't be taken long term...they are catabolic and will lead to many deleterious effects to the body.

Benicar can be taken long term if necessary without any known deleterious effects.

Actually folks, IMO...in the future, we'll see Benicar, or an improvement there of, used to prevent inflammatory illnesses like heart disease...etc. In place of, or in conjunction with, low-dose asprin.

Keep in mind, Marshall's discovery of this inflammatory cascade is a major medical breakthrough in our understanding of the immune system and of the many inflammatory diseases associated with it.

It's truely amazing!

Scott
 

This is an absolutely outrageous thing to say!!! YOU JUST DON'T KNOW.

It has not been used very long and it has only been used on a largish scale in much smaller amounts than the dosages rec by Marshall and Scott. So how the Hell can you make such a assertion?

BTW: I just realised that I called Scott "Trevor" in my last post, sorry for that, my brain has not been Benicar-cleaned up yet!

Nelly
 

Thank you for posting such an encouraging message.

I like this quote:

"You can always spot the pioneers - they are the ones with the arrows in their backs"

I'd like to share a personal side of me...by now many of you know I'm a passionate person.

My favorite movie of all time is Mel Gibson's, Braveheart.

My children tell me that my passion reminds them of William Wallace (played by Mel Gibson) in that movie. They bought the DVD for me for Christmas several years ago...I watch it frequently.

Mel Gibson plays William Wallace as a very passionate freedom fighter for Scotland.

I picture myself in a similar role here...I'm sort of a freedom fighter too. I haven't chosen this path...neither did William Wallace (in the movie anyway, actual history is debatable).

This disease has forced me to confront it. I either fight for freedom or succumb to defeat.

With that in mind, I remember my favorite and the most passionate scenes of the movie.

It takes place prior to the battle at Stirling. There, William Wallace is addressing his fellow Scotsmen who are reluctant to fight:

William Wallace: ....you stand here in defiance of tyranny...you've come to fight as free men....and free men you are.

What will you do with that freedom?

Will you fight?

Soldiers:....grumbling say, ...No, against that, we will run and we will live.

William Wallace: ....aye, fight and you may die,...run, you'll live...at least a while.

And dying in your beds, many years from now, would you be willing to trade all the days from this day to that, for one chance....Just One Chance!... to come back here and tell our enemies that they may take our lives, but they'll NEVER take our FREEDOM!!!

Fellow soldiers against Lyme disease, I see ourselves in a similar situation. We can chose to fight or we can be coward and run.

I fight for freedom from this disease. I really have no choice.

Freedom to all,

Scott

[This message has been edited by free2reckon (edited 13 May 2004).]
 

quote:

---

Originally posted by free2reckon:
I agree, time will tell...it's just my opinion that it's safe...you don't have to agree with my opinion...though I'm frequently right.

Scott

---

Proverbs 14:12
There is a way which seems right to a man, but its end is the way of death.

But, would just any licorice raise the BP? Or it has to be that and taken in milk?

Just curious...

Rosemary
 

Licorice might be a good idea in the begining when you're feeling dizzy and concerned about low B, but I don't know for sure. I did consider it when I was feeling woozy. However, Dr. Marshall is not a proponent of licorice or B vitamins in the early phases because they contain some vitamin D.

I think it's really important to get those d tests done in the beginning. See if this is an issue for us. Regardless, vitamin D is involved in the inflammation cycle in some way. It's some kind of steroidal hormone precursor which I can't explain, but affects the parathyroid among other things. It's the rapid drop of the 1,25-D that causes a shift in the hormones, along with suppressing the inflammatory process and activating the immune system, and it's a combination of these things that causes some of the initial symptoms of dizziness and fatigue.

I had one night of extreme itching. Really bizarre, as I'm not even on abx yet. But Marshall says that's a herx from my own immune system finally being freed up enought to recognize the pathogens. That's exciting! Oddly, in the past I dealt with my itching by taking large amounts of b vitamins (licorice), and it stopped the itching. Now, with this latest itching episode, I'm wondering if the B was helping or simply stopping the immune system's ability to respond to the pathogens by increasing the inflammatory cascade? This is Marshall's concern, that a lot of supplements are designed to boost the immune system. In the wrong way. We don't want to suppress it, we just want it freed up to work properly. Boosting it with supplements may actually be contributing to the inflammatory cascade.

penny
 

quote:

---

Originally posted by pennyhoule:
I think it's really important to get those d tests done in the beginning. See if this is an issue for us.

---

I concur wholeheartedly with Penny about the baseline testing recommended by Trevor Marshall.

I also concur with the analogy that we are all pioneers on the frontier here. We owe it to ourselves and to those who follow after us, and we owe it especially to Trevor Marshall too, to get the recommended baseline testing done FIRST, BEFORE starting Benicar.

I suspect that late-stage Lyme disease might actually turn out to be an "atypical" presentation of sarcoidosis, based on a couple of PubMed abstracts I found about Bb and granuloma in the bone marrow. (I posted those abstracts elsewhere.)

We owe it to ourselves and to other patients, and we owe it to our prescribing doctors and LLMDs, to get the baseline testing (link, below) done because we don't want to put their licenses to practice medicine in jeopardy by failing to do so.
http://www.sarcinfo.com/d-ratio.htm

This is not expensive testing, at least not in the larger scheme of things, especially considering the enormous cost of this disease for long-term treatment and for loss of productivity. Byron posted elsewhere that the cost of the D-metabolite testing is in the range of $280-$350, if I recall, but I haven't checked it myself. I doubt that ACE testing is all that expensive because it's a pretty routine test nowadays.

Here's the link to the discussion "Phorum" at the SarcInfo website, so that you can see for yourself the importance of doing the baseline testing.

http://sarcinfo.com/phorum/list.php?f=1

Free2Reckon might not feel the need to do these tests himself, but I don't think that's good advice for the rest of us to follow.

I worry that our failure to get the important baseline testing done might jinx a potentially beneficial therapy for other Lyme patients later, if too many Lyme patients rush to start using high doses of Benicar without bothering to get lab data first.

I want this idea to succeed just as much as everyone else does who is thinking about doing it. That's why I believe that it's so important that folks, who are really serious about doing the Marshall Protocol, follow Penny's example and get the recommended lab tests done at baseline FIRST, BEFORE starting Benicar.

You were not "here" for the ICHT discussions. This is why many of us are very, very cautious.

A doctor who lost his license in the states, went to Italy to give DNP (in a class with cyanide) to "cure" lyme disease and cancer. This very potent acid, greatly speeds up glycolysis - the pathway that lyme, cancer and malaria take.

However, what NB didn't know/realize...that in doing so...this would seriously further deplete the electrolytes - esp. Mg which is used in both pathways to make ATP.

A young doctor, an M.D., with lyme, went to Italy to be "cured". He had a cardiac arrest and died.

Sooo when anyone comes on this board and claims to have found a "cure", several may challenge this.

I have no doubt, you FEEL better! But...will this treatment MAKE you better? Or is it getting OFF the abx. and taking an anti-inflammatory that will "cure"?

ASA...good old aspirin (an anti-inflammatory)also reduces TNF alpha. But those who take Benicar CANNOT TAKE ASPIRIN...the risk of kidney damage goes up above 300mg. per day.
I fear many will not realize/know this. Many pop ASA without a thought.

As a doctor and researcher who has studied immunology and microbiology, why are you not interested in looking at and discussing my documented research, including of late, the Romanian abstract? Look at the % drop of Mg. It is astounding.

Only when we work TOGETHER...sharing information, seeing how this all fits together, will we truly finish this puzzle and find the safest cure.

quote:

---

Originally posted by Marnie:
But those who take Benicar CANNOT TAKE ASPIRIN...the risk of kidney damage goes up above 300mg. per day. I fear many will not realize/know this. Many pop ASA without a thought.

---

Thanks for the warning about the dangerous interaction of aspirin together with Benicar, Marnie. That's very valuable to know.

Somewhere under one of these topics, someone else posted an excellent explanation about why supplementing with Ca and Mg isn't beneficial until/unless the D-metabolites are balanced first. It was posted for your benefit, following one of your posts, but I don't think you ever had a chance to see it.

If I knew where to look for it, I would post it again for you, but this topic has been progressing so rapidly that it's hard to keep up with it.

Hopefully, maybe someone else will remember where to find it and can "copy and paste" those remarks here for you and for everyone else who might be feeling confused about this.

I think we all recognize the importance of magnesium, but many of us have taken and do take lots of magnesium. If magnesium were enough to do the trick, then folks wouldn't still be looking for answers.

That's why it's important to put the horse in front of the cart, and not the other way around, if we want to win this race.

Let's focus on the promise of Benicar now to help us balance the D-metabolites in hopes that doing so will allow the magnesium levels to normalize again.

Let's also all remember the importance of measuring those D-metabolites FIRST, BEFORE starting a trial of Benicar. Also, remember to measure ACE too, as recommended by Trevor Marshall.

PS - I'm editing to add another Thank You to Marnie for reminding us about the ICHT fiasco and the disappointing promise of a "quick cure" by Bachynski(sp) in Italy. Scott wasn't around back then, so he can't understand why folks are feeling so wary now of him when he proclaims another miraculous sure-cure.

[This message has been edited by TX Lyme Mom (edited 09 May 2004).]
 

I read in one of your posts that you have already dropped down in your dosage of Benicar..., it sounds like by half. from 40mg to 20mg...

You have been on the drug for a very short time...is the basis of trevors dosing, based on inflammatory symptoms going away?

From what I understand the drug does not work at regular BP dosages...just curious what you think is happening...

Also...

I get concerned that another mechanism might be in play, like the dialating of the blood vessels....allowing irregular sized or damaged blood cells to pass easier...thus decreasing pain and other symptoms...still a useful but another mechanism entirely at play...

I would be curious if this has been looked at in his research....

Pathologists working with CFIDS noticed that there was a marked size increase in some cells making it difficult for them to pass easily thu the circulatory system...a vasculitis resulting...

Without doing his testing protocol I don't see how someone doing his protocol could tell the difference, which mechanism is in play?

Sounds like you are dosing based on your symptoms, since you have not done the tests... without the tests how will you know to stop the drug? By cutting back and seeing what happens?

Byron2

quote:

---

Originally posted by free2reckon:

...e.g., I'm already down to 20 mg tid and will likely be able to lower than in the not to distant future.

[This message has been edited by free2reckon (edited 09 May 2004).][/B]

---

Scott, this perplexed me why you went from 40mg to 20mg. I could swear I read according to Dr. Marshall that too small of a dose can be worse than no dose--if that is true is it only true in the beginning and not after 7 days? Wouldn't you think it is a good idea to stay on 40mg tid for as long as until one gets to the point of a plateau in reduction in symptoms and then go to lower dose to see if they stay at the same level and THEN add in the minocycline and that way one would know what is doing what?
Jason
 

quote:

---

Originally posted by rosesisland2000:
But, would not the milk make you have more Vit D and we don't need that. Besides, I am lactose intolerant and don't drink milk.

But, would just any licorice raise the BP? Or it has to be that and taken in milk?

Just curious...

Rosemary

---

quote:

---

Originally posted by pennyhoule:
Hi Jason,

Licorice might be a good idea in the begining when you're feeling dizzy and concerned about low B, but I don't know for sure. I did consider it when I was feeling woozy. However, Dr. Marshall is not a proponent of licorice or B vitamins in the early phases because they contain some vitamin D.

I think it's really important to get those d tests done in the beginning. See if this is an issue for us. Regardless, vitamin D is involved in the inflammation cycle in some way. It's some kind of steroidal hormone precursor which I can't explain, but affects the parathyroid among other things. It's the rapid drop of the 1,25-D that causes a shift in the hormones, along with suppressing the inflammatory process and activating the immune system, and it's a combination of these things that causes some of the initial symptoms of dizziness and fatigue.

I had one night of extreme itching. Really bizarre, as I'm not even on abx yet. But Marshall says that's a herx from my own immune system finally being freed up enought to recognize the pathogens. That's exciting! Oddly, in the past I dealt with my itching by taking large amounts of b vitamins (licorice), and it stopped the itching. Now, with this latest itching episode, I'm wondering if the B was helping or simply stopping the immune system's ability to respond to the pathogens by increasing the inflammatory cascade? This is Marshall's concern, that a lot of supplements are designed to boost the immune system. In the wrong way. We don't want to suppress it, we just want it freed up to work properly. Boosting it with supplements may actually be contributing to the inflammatory cascade.

penny

---

quote:

---

Originally posted by Marnie:
ASA...good old aspirin (an anti-inflammatory)also reduces TNF alpha. But those who take Benicar CANNOT TAKE ASPIRIN...the risk of kidney damage goes up above 300mg. per day.
I fear many will not realize/know this. Many pop ASA without a thought.

As a doctor and researcher who has studied immunology and microbiology, why are you not interested in looking at and discussing my documented research, including of late, the Romanian abstract? Look at the % drop of Mg. It is astounding.

Only when we work TOGETHER...sharing information, seeing how this all fits together, will we truly finish this puzzle and find the safest cure.

---

From: www.Intelihealth.com (Harvard Medical School and Aetna)

Here is what taking advice from unqualified people can do to you:

Licorice (Glycyrrhiza glabra), Deglycyrrhizinated Licorice, Carbenoxolone

Be aware that the U.S. Food and Drug Administration does not strictly regulate herbs and dietary supplements. There is no guarantee of strength, purity or safety of products containing or claiming to contain licorice. Decisions to use herbs or supplements should be carefully considered. Individuals using prescription drugs should discuss taking herbs or supplements with their pharmacist or health care provider before starting.

Evidence
Unproven Uses
Potential Dangers
Interactions
Dosing
Summary
Resources

Evidence

This monograph discusses licorice; deglycyrrhizinated licorice (DGL), which does not contain glycyrrhizinic acid, a chemical in licorice that causes many side effects; and carbenoxolone, a chemical that can be processed out of licorice. Scientists have studied these three substances for the following health problems:

Peptic ulcer disease
Licorice extracts, DGL and carbenoxolone have been studied for treating peptic ulcers. DGL (but not carbenoxolone) may offer some benefits. However, these studies have been small, with flaws in their designs, and results of different studies have disagreed with each other. Therefore, it is unclear whether there is any benefit from licorice for this condition.
Apthous ulcers, canker sores
Some research suggests that licorice extracts, DGL and carbenoxolone may provide benefits for treating cankers sores. However, studies have been small, with flaws in their designs. The safety of DGL makes it an attractive therapy if it does speed healing of these sores, but it is not clear at this time whether there is truly any benefit.
Bleeding stomach ulcers caused by aspirin
Although there has been some study of DGL in this area, it is not clear what effects DGL has on gastrointestinal bleeding.
Herpes simplex virus
Laboratory studies have found that DGL may hinder the spread and infection of herpes simplex virus. Studies in humans have been small, but they suggest that topical application of carbenoxolone cream may improve healing and prevent recurrence.
Viral hepatitis
The licorice extracts DGL and carbenoxolone have been proposed as possible therapies for viral hepatitis. Animal studies have investigated the mechanism of licorice in hepatitis, and studies in humans have shown some benefits with a patented intravenous licorice preparation that is not available in the United States. Studies using oral licorice have been small, with flaws in their designs. Therefore, it is not clear whether there is any benefit from oral licorice for hepatitis treatment.
High potassium levels resulting from abnormally low aldosterone levels
In theory, because of the known effects of licorice on the kidney, there may be some benefits of licorice for high potassium levels caused by a condition called hypoaldosteronism. There is early evidence in humans in support of this use. However, a qualified health care provider should supervise treatment.
Familial Mediterranean fever
A small clinical pilot study and laboratory study results of a multi-ingredient preparation containing licorice, called Immunoguard, suggest efficacy in managing familial Mediterraneann fever. Well-designed study of licorice alone is necessary to make a recommendation.
Genital herpes
Available studies have not found any benefit from carbenoxolone cream when applied topically to treat genital herpes infections.

Unproven Uses

Licorice has been suggested for many other uses, based on tradition or on scientific theories. However, these uses have not been thoroughly studied in humans, and there is limited scientific evidence about safety or effectiveness. Some of these suggested uses are for conditions that are potentially very serious and even life-threatening. You should consult a health care provider before taking licorice for any unproven use.

Adrenal insufficiency (Addison's disease)
Antimicrobial
Antioxidant
Antispasmodic
Aplastic anemia
Asthma
Bacterial infections
Bad breath
Body fat reducer
Bronchitis
Cancer
Chronic fatigue syndrome
Colitis
Colorectal cancer
Constipation
Coronavirus
Cough
Dental hygiene
Depression
Detoxification
Diabetes
Diverticulitis
Dropped head syndrome
Eczema
Epstein-Barr virus Fever
Laryngitis
Gastroesophageal reflux disease
Gentamicin-induced kidney damage
Graft healing
High cholesterol
HIV
Hormone regulation
Inflammation
Inflammatory skin disorders
Liver protection
Lung cancer
Menopausal symptoms
Methicillin-resistance Staphylococcus aureus
Muscle cramps
Obesity
Osteoarthritis
Plaque
Polycystic ovarian syndrome
Rheumatoid arthritis
SARS
Skin disorders
Sore throat
Stomach upset
Urinary tract inflammation

Potential Dangers

Allergies

People should avoid licorice if they have a known allergy to licorice, any component of licorice or any member of the Fabaceae (Leguminosae) plant family. Signs of allergy may include rash, itching or shortness of breath.

Side Effects

Licorice contains a chemical called glycyrrhizic acid, which causes many side effects. DGL has had the glycyrrhizic acid removed and is considered safer for use.

Many of the adverse effects of licorice result from the actions it has on hormone systems in the body. By altering the activities of certain hormones, licorice may cause electrolyte disturbances in some people. These disturbances can include sodium and fluid retention, low potassium levels and metabolic alkalosis. Licorice has caused high blood pressure and negative effects on the brain (hypertensive encephalopathy), with symptoms of serious headache, nausea, vomiting and one-sided weakness. Electrolyte abnormalities may also lead to irregular heartbeats, heart attack, kidney damage, muscle weakness or muscle breakdown. People with congestive heart failure, coronary heart disease, kidney or liver disease, fluid retention, high blood pressure and hormonal abnormalities and those taking diuretics should avoid taking licorice. Abnormally low testosterone levels in men or high prolactin or estrogen levels in women have also been reported. These adverse effects may make it difficult to become pregnant and may cause menstrual abnormalities. Reduced body fat mass has been observed. High doses of licorice may cause temporary vision problems or loss.

Pregnancy And Breast-Feeding

Licorice cannot be recommended during pregnancy and breast-feeding because of the risk of abnormalities caused by altered hormone levels and the possibility of premature labor.

Interactions

Interactions with drugs, supplements and other herbs have not been thoroughly studied. The interactions listed below have been reported in scientific publications. If you are taking prescription drugs, speak with your health care provider or pharmacist before using herbs or dietary supplements.

Interactions With Drugs

In general, prescription drugs should be taken one hour before licorice or two hours after licorice because licorice may increase the absorption of many drugs. Increased absorption may increase the activities and side effects of some drugs including nitrofurantoin. Because the toxicity of digoxin (Lanoxin) is increased when potassium levels are low, people who take digoxin and are interested in using licorice should discuss this with their health care provider. Increased monitoring may be necessary.

Licorice may reduce the effects of blood pressure or diuretic (urine-producing) drugs, including hydrochlorothiazide and spironolactone. Furthermore, use of licorice with hydrochlorothiazide may cause potassium levels to fall too low and lead to dangerous complications. Other drugs that can also cause potassium levels to fall too low and are best avoided when using licorice include insulin, sodium polystyrene (kayexalate) and laxatives. Licorice may increase the adverse effects associated with corticosteroids, such as prednisolone, and monoamine oxidase inhibitors, such as phenelzine (Nardil).

Licorice may reduce the effects of birth control pills, hormone replacement therapies and testosterone therapy. Drugs that may increase the tendency for irregular heart rhythms, such as erythromycin or amiodarone (Cordarone), are best avoided when using licorice. In theory, licorice may increase the risk of bleeding when used with anticoagulants (blood thinners) or antiplatelet drugs. Examples include warfarin (Coumadin), heparin and clopidogrel (Plavix). Some pain relievers may also increase the risk of bleeding if used with licorice. Examples include aspirin, ibuprofen (Motrin, Advil) and naproxen (Naprosyn, Aleve, Anaprox). Chewing tobacco may increase the toxicity of licorice gums by causing electrolyte disturbances.

Licorice was shown to increase absorption of diclofenac gel in a rat study. Phosphate salts have been shown to increase licorice absorption.

Interactions With Herbs And Dietary Supplements

Low potassium levels may occur if licorice is used with herbs that have laxative properties, such as senna or psyllium. Herbs that increase the risk of bleeding, such as Ginkgo biloba and garlic (Allium sativum); those that have diuretic properties, such as horsetail (Equisetum arvense); and supplements that lower blood pressure, such as hawthorn (Crataegus laevigata), may have a greater tendency for adverse effects when used with licorice. Licorice may also increase adverse effects associated with herbs that have possible monoamine oxidase inhibitor activity, such as St. John's wort (Hypericum perforatum).

Interactions With Laboratory Values

Licorice has been shown to decrease cortisol, ACTH (adrenocorticotrophic hormone), aldosterone and potassium levels in animals. Increases in renin and sodium levels have also been observed.

Dosing

The doses listed below are based on scientific research, publications or traditional use. Because most herbs and supplements have not been thoroughly studied or monitored, safety and effectiveness may not be proven. Brands may be made differently, with variable ingredients even within the same brand. Combination products often contain small amounts of each ingredient and may not be effective. Appropriate dosing should be discussed with a health care provider before starting therapy; always read the recommendations on a product's label. The dosing for unproven uses should be approached cautiously, because scientific information is limited in these areas.

The expert panel German Commission E recommends that licorice be used for only four to six weeks unless under direct medical supervision. However, this is based on the use of relatively large daily doses (five to 15 grams per day). Many experts believe that extended treatments may be safe if lower doses are used. In a four-week study in healthy individuals, recommended doses were well tolerated, with few adverse effects. There are no standard or well-studied doses of licorice, and many different doses are used traditionally.

Adults (Aged 18 Or Older)

Licorice powdered root (4 percent to 9 percent glycyrrhizin): Doses of one to four grams taken by mouth daily, divided into three or four doses, have been used.

Licorice fluid extract (10 percent to 20 percent glycyrrhizin): Doses of two to four milliliters per day have been taken by mouth.

DGL extract tablets: Doses of 380 to 1140 milligrams three times daily taken by mouth 20 minutes before meals have been used.

Carbenoxolone gel or cream: A 2 percent cream or gel has been applied five times a day for seven to 14 days for herpes simplex virus skin lesions.

Children (Younger Than 18)

There are not enough scientific data to recommend licorice for use in children, and licorice is not recommended because of potential side effects.

Summary

Licorice and licorice extracts have been suggested as treatments for many conditions. However, there is not enough scientific evidence to support the use of licorice or licorice extract for any medical condition. Licorice may increase the risk of electrolyte disturbances and hormonal abnormalities and should be avoided in those with heart disease, high blood pressure or underlying hormonal disorders. It should also be avoided in pregnant or breast-feeding women and in children. It is possible that licorice may increase the risk of bleeding. Safety of use beyond four weeks has not been extensively studied. Consult your health care provider immediately if you have any side effects.

The information in this monograph was prepared by the professional staff at Natural Standard, based on thorough systematic review of scientific evidence. The material was reviewed by the Faculty of the Harvard Medical School with final editing approved by Natural Standard.

Resources

Natural Standard: An organization that produces scientifically based reviews of complementary and alternative medicine (CAM) topics
National Center for Complementary and Alternative Medicine (NCCAM): A division of the U.S. Department of Health & Human Services dedicated to research

Selected Scientific Studies: Licorice

Natural Standard reviewed more than 350 articles to prepare the professional monograph from which this version was created.

Some of the more recent English-language studies are listed below:

Amaryan G, Astvatsatryan V, Gabrielyan E, et al. Double-blind, placebo-controlled, randomized, pilot clinical trial of ImmunoGuard: a standardized fixed combination of Andrographis paniculata Nees, with Eleutherococcus senticosus Maxim, Schizandra chinensis Bail and Glycyrrhiza glabra L. extracts in patients with familial Mediterranean fever. Phytomedicine 2003;May, 10(4):271-285.
Arase Y, Ikeda K, Murashima N, et al. The long term efficacy of glycyrrhizin in chronic hepatitis C patients. Cancer 1997;79(8):1494-1500.
Carbonell-Barrachina AA, Aracil P, Garcia E, et al. Source of arsenic in licorice confectionery products. J Agric Food Chem 2003;Mar 12, 51(6):1749-1752.
Cinatl J, Morgenstern B, Bauer G, et al. Glycyrrhizin, an active component of liquorice roots, and replication of SARS-associated coronavirus. Lancet 2003;Jun 14, 361(9374):2045-2046.
Elinav E, Chajek-Shaul T. Licorice consumption causing severe hypokalemic paralysis. Mayo Clin Proc 2003;Jun, 78(6):767-768.
Eriksson JW, Carlberg B, Hillorn V. Life-threatening ventricular tachycardia due to liquorice-induced hypokalaemia. J Intern Med 1999;245(3):307-310.
Fujioka T, Kondou T, Fukuhara A, et al. Efficacy of a glycyrrhizin suppository for the treatment of chronic hepatitis C: a pilot study. Hepatol Res 2003;May, 26(1):10-14.
Harada T, Ohtaki E, Misu K, et al. Congestive heart failure caused by digitalis toxicity in an elderly man taking a licorice-containing chinese herbal laxative. Cardiology 2002;98(4):218.
Hino****a F, Ogura Y, Suzuki Y, et al. Effect of orally administered shao-yao-gan-cao-tang (Shakuyaku-kanzo-to) on muscle cramps in maintenance hemodialysis patients: a preliminary study. Am J Chin Med 2003;31(3):445-453.
Hughes J, Sellick S, King R, Robbe IJ. Re: "Preterm birth and licorice consumption during pregnancy." Am J Epidemiol 2003;Jul 15, 158(2):190-191; author reply, 191.
Kamei J, Nakamura R, Ichiki H, Kubo M. Antitussive principles of Glycyrrhizae radix, a main component of the Kampo preparations Bakumondo-to (Mai-men-dong-tang). Eur J Pharmacol 2003;May 23, 469(1-3):159-163.
Kang DG, Sohn EJ, Mun YJ, et al. Glycyrrhizin ameliorates renal function defects in the early-phase of ischemia-induced acute renal failure. Phytother Res 2003;Sep, 17(8):947-951.
Kang DG, Sohn EJ, Lee HS. Effects of glycyrrhizin on renal functions in association with the regulation of water channels. Am J Chin Med 2003;31(3):403-413.
Lin JC. Mechanism of action of glycyrrhizic acid in inhibition of Epstein-Barr virus replication in vitro. Antiviral Res 2003;Jun, 59(1):41-47.
Liu J, Manheimer E, Tsutani K, Gluud C. Medicinal herbs for hepatitis C virus infection: a Cochrane hepatobiliary systematic review of randomized trials. Am J Gastroenterol 2003;Mar, 98(3):538-544.
Nokhodchi A, Nazemiyeh H, Ghafourian T, et al. The effect of glycyrrhizin on the release rate and skin penetration of diclofenac sodium from topical formulations. Farmaco 2002;Nov, 57(11):883-888.
Ofir R, Tamir S, Khatib S, Vaya J. Inhibition of serotonin re-uptake by licorice constituents. J Mol Neurosci 2003;Apr, 20(2):135-140.
Oganesyan KR. Antioxidant effect of licorice root on blood catalase activity in vibration stress. Bull Exp Biol Med 2002;Aug, 134(2):135-136.
Russo S, Mastropasqua M, Mosetti MA, et al. Low doses of liquorice can induce hypertension encephalopathy. Am J Nephrol 2000;20(2):145-148.
Sasaki H, Takei M, Kobayashi M, et al. Effect of glycyrrhizin, an active component of licorice roots, on HIV replication in cultures of peripheral blood mononuclear cells from HIV-seropositive patients. Pathobiology 2002-2003;70(4):229-236.
Serra A, Uehlinger DE, Ferrari P, et al. Glycyrrhetinic Acid decreases plasma potassium concentrations in patients with anuria. J Am Soc Nephrol 2002;13(1):191-196.
Sigurjonsdottir HA, Manhem K, Axelson M, Wallerstedt S. Subjects with essential hypertension are more sensitive to the inhibition of 11 beta-HSD by liquorice. J Hum Hypertens 2003;Feb, 17(2):125-131.
Sohn EJ, Kang DG, Lee HS. Protective effects of glycyrrhizin on gentamicin-induced acute renal failure in rats. Pharmacol Toxicol 2003;Sep, 93(3):116-122.
Strandberg TE, Andersson S, Jarvenpaa AL. Risk factors for preterm delivery. Lancet 2003;Feb 1, 361(9355):436; author reply, 436-437.
van Rossum TG, Vulto AG, Hop WC, et al. Glycyrrhizin-induced reduction of ALT in European patients with chronic hepatitis C. Am J Gastroenterol 2001;96(8):2432-2437.

Last updated September 29, 2003

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Marnie, can you please cite your source for the following statement?

[b]"ASA...good old aspirin (an anti-inflammatory)also reduces TNF alpha. But those who take Benicar CANNOT TAKE ASPIRIN...the risk of kidney damage goes up above 300mg. per day.
I fear many will not realize/know this. Many pop ASA without a thought."[b]

Thanks,

penny

Scott said that he has lowered his dose because he has his herx under control. He also felt that he had already knocked his bacterial load down quite a bit prior to starting the MP. That could explain why he benefitted so greatly right out the door.

Marshall talks about adjusting the benicar according to the herx. Scott's been discussing his own program with Marshall so this may explain it. We'll have to let Scott clarify things for himself, but I just wanted to share what I remember Scott saying.

penny
 

Thanks for catching that little detail, Penny. I should have thought to check this myself, but I was in a hurry and didn't bother to do so, before re-emphasizing the mistaken information by quoting it.
 

All of you who are posting against Scott sound just like the physicians from Steere's camp who don't advocate antibiotic therapy because they say it's dangerous. Do you guys see the frickin resemblance in your behavior? Give him credit for trying to help and back off if you don't need it.

Scott, I've printed out Marshall's paper titled "Antibacterial Mechanisms for Angiotensin II Receptor Blockers". I will bring it to my doctor tomorrow. If he feels uneasy about it, I'll ask him if I can just try it for a week or two. I might fail in his office, but he will have Marshall's paper in his hand before I leave.

Thanks to hyperbarics, my BP is a perfect 120/80 from 90/60. It has also stabilized my body temp to a perfect 98.6 from 96 . People are saying that I look healthier than ever. Thinking outside the box is getting me farther than ever and maybe Benicar is another rung on the ladder to a better life. And if it's not, who cares? We've all been through this scenario over and over, and we've all taken prescriptions and herbs that would make any Joe physician cringe. I think treatment with antibiotics alone is "stagnant" therapy. The ultimate hamster wheel!!

-greg
 

I have already warned about needing to monitor blood pressure carefully if on licorice. My recommendation to use licorice comes from my experience of seeing Dr. Poesnecker who was qualified to treat patients with licorice and I was on it for a long time and thousands of his patients were and they did fine and it normalized their bp. Let me repeat myself: he put patients on Baschetti licorice who had low morning cortisol and/or extreme hypotension. If you are not one who is a good licorice candidate you can develop edema. Read the summary below and you can see it warns of raising blood pressure. Duh--that is why I recommended it!

JRW, let's be sensible here. Licorice is a food so are you any more qualified to tell me I am unqualified to tell others to look into eating it? It goes w/o saying virtually any supplement should be studied before putting it into your body. I also only recommended licorice for those few who used extreme hypotension as a reason to avoid Benicar in the first place and that they should get off of it after their bp paradoxically normalizes hopefully soon after taking Benicar.

The summary says that studies over 4 weeks have not been done. Since the effects of licorice can continue for many days or even weeks after one gets off of it it should probably only be used before starting the Benicar so when they do start it they don't feel week and dizzy and pass out from their extreme hypotension. If you have any specific valuable insites into licorice please share with the group, otherwise I have already voiced my concerns with using it as well as the benefits which you have ignored. Thanks.
Jason

quote:

---

Originally posted by JRWagner:
From: www.Intelihealth.com (Harvard Medical School and Aetna)

Here is what taking advice from unqualified people can do to you:

Summary

Licorice and licorice extracts have been suggested as treatments for many conditions. However, there is not enough scientific evidence to support the use of licorice or licorice extract for any medical condition. Licorice may increase the risk of electrolyte disturbances and hormonal abnormalities and should be avoided in those with heart disease, high blood pressure or underlying hormonal disorders. It should also be avoided in pregnant or breast-feeding women and in children. It is possible that licorice may increase the risk of bleeding. Safety of use beyond four weeks has not been extensively studied. Consult your health care provider immediately if you have any side effects.

---

[This message has been edited by jseaton357 (edited 09 May 2004).]

[This message has been edited by jseaton357 (edited 09 May 2004).]
 

Also, there are several members of the group who cannot read large blocks of dense print easily. They have Lyme-impaired eyes, so it helps if we break up our responses into many short paragraphs of no more than 2-3 short sentences for heir benefit.

If you want to edit your previous post to "fix" it, then there is an icon in the line right beside your screen name which permits you to edit your posts.

Your comments are valuable and I'm making this suggestion to you so that more people will be able to benefit from what you have to say -- instead of "scrolling on by" your response because it is too difficult for them to read.

Thanks for your contributions and WELCOME to LymeNet, Jason...since you are still relatively new around here.

PS - I'm editing now, too, to say thanks for editing your post (above), Jason.

[This message has been edited by TX Lyme Mom (edited 09 May 2004).]
 

Would you do us lymies a favor? Please break up your long paragraphs into smaller ones so those of us who are visually-challenged are better able to read what you have written.

Thanks!

editing....heehehe, TXLM... great minds think alike?? I posted this reply while trying to read page 4 of all these posts. THEN I come to page 5 and see you already posted that!
------------------
oops!
Lymetutu

[This message has been edited by Lymetoo (edited 09 May 2004).]
 

I think you jump to conclusion about what cannot happen when the truth is we don't know. Did you consider that borellia may become stealth to the immune system precisely b/c the immune system is disabled first through inflammation? Eliminating inflammation through Benicar could then become the equivalent to defanging the serpant.

Also, no one has mentioned the idea that it may be a very good idea to take a lyme based Transfer Factor. Chisolm makes one and now Tomorrow Foods has a lyme specific one if I recall correctly. Might not hurt to educate the immune system into seeing the lyme and together with Benicar and an abx or rife machine we might strike a devistating blow to the dirty spiros and send them on their merry little way to hell.

What about cyst form you say? Well, good point but have you considered that so long as our immune system can kill all the active forms then the cyst forms can just stay there indefinitely (does anyone know if cyst forms HAVE to eventually come out of cyst form or can they just last there for years w/o running out of energy and dying?) and we should feel fine, right? But adding some flagyl or tini at some point down the road might not be a bad idea. Just my thoughts.
Jason

[QUOTE]Originally posted by JRWagner:
[B]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...

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!

[This message has been edited by jseaton357 (edited 09 May 2004).]

[This message has been edited by jseaton357 (edited 09 May 2004).]
 

quote:

---

Originally posted by Lymetoo:
Jason....welcome to Lymenet!

Would you do us lymies a favor? Please break up your long paragraphs into smaller ones so those of us who are visually-challenged are better able to read what you have written.

Thanks!

editing....heehehe, TXLM... great minds think alike?? I posted this reply while trying to read page 4 of all these posts. [b]THEN I come to page 5 and see you already posted that![/B]

---

[This message has been edited by jseaton357 (edited 09 May 2004).]
 

No only can it be a problem with Blood pressure...which you did warn about...but many other areas of health as well. Did you warn of these possible problems??? NO.

As far as the bacteria becoming stealth because of the immune system when one is first bitten...I forgive you for not having tenn years to research this...the bacteria changes as it enters the body...and does so continuously at will...a "Smart Bacteria" if you will. Recent studies have shown that bacteria can "communicate" with each other. This has nothing to do with our immune system...they even do so in vivo.

Cystic forms...Metronidazole? Tinnidalole?

Old news. Plaquenil??? Same ol' same ol.

(I have had long conversations with Dr. Martin A. Barr, who worked with Nobel Prize winning Biochemists. He first proposed the idea of Metronidazole for the cystic form of Lyme...HIS words hold weight because he has the credentials.)

Even though I do NOT like Steere, he HAS done some valuable studies, ON HUMANS, and he is slowly changine his stature on Lyme.

Don't compare someone (Steere, et.al.) doing research SPECIFICALLY ON LYME, with a veterinarian and one who has a PHD from some university in an (unknown as well) disipline.

Steere may not please all, but he DID identify the cause of the symptoms we now know as Lyme Disease.

The jury is still out on both camps...If either side had proof, there would be no controversy. NO ONE HAS PROOF YET!!!

Please don't put valid research institutions or researchers in the same boat as Marshall and Scott...no matter how "pure" their intentions may be.

This is one of the reasons why this theory was not impressive back in 1999...

There are many facets to science...thinking "out of the Box" doesn't in itself give a gold seal to the theories such people present...in fact, such thinking can, and often is, harmful.

Peace, love and wellness,
JRW
 

Yes, I have read how it can change forms to cyst in like 2 mins! My point is is that it may begin the inflammation process as soon as it enters the body. Being able to change forms at that point would then be icing on the cake for the lyme. Elminating inflammation may be first step to allowing an immune system (and imo one that is equipped with a good TF, if there is such a thing) to go after lyme no matter how quickly it changes form. Cyst is its only hope of escape and hopefully tini or flagly could take them out. Maybe the reason why cyst busting is not a solution in and of itself is that even if it is killing all cysts (not that it gets them all) there may always be more around to turn into cysts later on, just hanging around in different forms other than the cyst form at the time one is taking flagyl.

I have read of bacteria's ability to communicate and how when they are hit by abx they do an equivalent of a litteral "scream" and all bunch up together to protect themselves and form this biofilm which is virtually unpenatrable. This is another reason for instance I am a fan of using rife machines b/c there is no telling what they do and they might disturb the ability of the pathogen to communicate. You also said you had no inflammation markers but have you had MMP9 done? Shoemaker gives this one routinely and I think it has something to do with inflammation. And as Scott eluded to earlier, one cannot always measure inflammation, so are you going to assume it was not there? My last roomate and friend in Miami is a nuclear phycisist at U. of Miami. I see in him the common mistake of so many other scientific "skeptics" in that they think since they cannot explain something that it cannot be. Meanwhile more and more science is heading into the realm of philosophy to explain things, rather than pure mathematical explanations for everything. I did not begin to get well b/c I was eager to try to disprove everthing. Instead I got well by seeing how things might actually work. Then again, you are going to try Benicar but boy, you love giving a good skeptical ranting at the same time. The point is though that even if this is not a cure (and I have my doubts for sure) it could be the beginning of the end to major suffering that goes on and that's my hope for all of this. Scott may be making this protocol out to be the best thing since sliced bread every bit as much as Shoemaker makes cholestyramine out to be the savior in his book Desperation Medicine. If the truth lay somewhere in the middle then we have still come very far! Ok, enough philosophical rambling, on to my licorice defense, hehe.

As for my not explaining ALL possible side effects, I don't think that is feasible. Have you ever had a doc give you a prescription read you out ALL side effects before prescribing it? Come on! In fact I think most docs who ARE qualified to recommend abx don't tell the patients of the potential of quinolones to cause damage to tendons which I now know several to have reported. Do you not take an aspirin b/c of the possible side effects or miniscule risk? You weigh the benefit/risk ratio and proceed from there. I think a little licorice before starting Benicar is a cure to the hypotension problem. You're stretching a bit there to try to dismiss licorice and make me out to be a loose canon mad man. But please, be careful next time you eat a licorice jelly bean or Twizzler, will you?
Jason

quote:

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Originally posted by JRWagner:
Jason...perhaps you should go back and thoroughly read the article on Licorice.

No only can it be a problem with Blood pressure...which you did warn about...but many other areas of health as well. Did you warn of these possible problems??? NO.

As far as the bacteria becoming stealth because of the immune system when one is first bitten...I forgive you for not having tenn years to research this...the bacteria changes as it enters the body...and does so continuously at will...a "Smart Bacteria" if you will. Recent studies have shown that bacteria can "communicate" with each other. This has nothing to do with our immune system...they even do so in vivo.

Cystic forms...Metronidazole? Tinnidalole?

Old news. Plaquenil??? Same ol' same ol.

JRW

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[This message has been edited by jseaton357 (edited 10 May 2004).]
 

24-bit, what does this vote on magnesium thing in your signature mean? I don't get it.
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

I think we do need to be concerned about vit D.

It's part of the metabolic pathway that this perpetuating inflammatory cycle maintains itself.

We have a very similar pathogenesis as sarcoidosis.

Scott
 

That's why I use Lyprinol instead...it's has 5-LOX and some COX-2 inhibiting properties. Much safer and effective to use long term.

Scott
 

Concerning "Lyprinol"...I did a search the other day and found several companies that had theri version of the product...

Am wondering if they are all created equal or one that you have found is better and could you give a web address if you have one...

PS...for those not testing, perhaps doing lyprinol first, may help distinguish between which inflammatory cascade the symptoms are coming from...

Thanks,
Byron
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

Thankyou for your reply :-)

It seems as you said, that the success you are having with Benicar may have to do with the other Th1 inflammatory cascades being handled with the other things you are taking...

Perhaps you could post what the supplements are that you are taking for other inflammatory cascades?

Its possible that people taking Benicar may not have the same success as you, without handling those other cascades....letting everyone know the other things you are doing could be useful :-)

Byron

Could you possibly weigh in on your thoughts reguarding encysted Borellia and the relation to the use of Benicar.

Those of us who have been on Rocephin for some time have a real issue with addressing cysts. Doctor Jones usually approaches this near the end of an IV course by pulsing short courses of Flagyl in some.

Just trying to understand how obne may transition into interripting the inflammatory cascade safely, and the use of something like Flagyl..either before the transition..or along with..

Considering encysted Lyme is said to be protected from abx and our immune system. I know it's complicated because of the question as to how long and in what environmant the form may change..

Any thoughts or references appreciated..I certainly plan to invesigate this fully before making decisions with Doc.

Thanks,
Mo

I was wondering if you could share your conversation of last week with him, either here or privately?

I just wanted to express my appreciation to you for the posts that I've read that deal with the medical questions about Benicar.

I would also like to express that it isn't very helpful when long posts go on and on debating who said what with what authority.

I wish we could separate the posts into two to help facilitate for those of us that are more interested in the medical issues surrounding this medication.

I understand and respect everyone's right to post whatever they want but I find a good deal of the other issues debated here to be unnecessarily exhausting and non-productive.

Thanks for your help with Dr. J.

Marie
 

I'm going to discuss this with him at our next appt., in and around May 15th..and perhaps continue looking at it with him over time as we see him monthly..in respect to possible use with children or adults.

if any notes, ideas, or communication would be helpful..I could incorporate and report back..

Mo

[This message has been edited by Mo (edited 10 May 2004).]
 

I'll be happy to share whatever we learn from Dr. J.

I'm keeping my fingers crossed!

Marie
 

quote:

---

Originally posted by Mo:
Scott,
Could you possibly weigh in on your thoughts reguarding encysted Borellia and the relation to the use of Benicar.

Those of us who have been on Rocephin for some time have a real issue with addressing cysts.

---

Mo,
I hope you don't mind my interrupting to interject my own ideass about this. Your worry could turn out to be a moot question. Here's why I say so.

Bb has many defense mechanisms for evading the immune system and for hiding out in privileged niches. No one really knows for sure how or why Bb is able to evade both the immune response and antibiotics so effectively. The cyst-like stage is just one among several explanations regarding the persistence of Bb.

There's another new idea, which is less well known (yet), regarding the ability of Bb to form "granulomas" within the bone marrow, of all places!! (PMID # 12614200 and PMID # 12436300)

In other words, late-stage LD might actually represent an "atypical" presentation of sarcoidosis, at which Marschall's Benicar Protocol is aimed.

So might Bartonella, too, but in the lymph nodes instead of the bone marrow. (PMID # 9480364)

In other words, if it turns out that the real problem is Bb inside a granuloma somewhere in the body (bone marrow, or elsewhere), then perhaps it won't matter so much whether we shoot Flagyl at its cyst-like stage or not, as long as the immune system becomes invigorated enough to deal with it, no matter where it is or what pleomorphic form it's hiding in.

Does that make sense?

I'm still very eager to hear what Scott's ideas are about this, though, too. Good question, Mo. Thanks for bringing it up.

PS - If you want me to post those 3 abstracts here (ie, the 3 PMID #'s, above), I will. I didn't re-post them again here, because they have already been posted recently elsewhere, during these many Benicar discussions.

[This message has been edited by TX Lyme Mom (edited 10 May 2004).]
 

First,,,,,,,

I think that this is one of many things that are helping Scott....he like myself have a wide protocol that we follow...almost spooky in its similarities. (Except I do heparin, which by the way has been recently shown to stunt the reproduction of babesia)

But.....the stopping of this inflamation is 'key' to the end result!

In otherwords...something holds us back...and this may be it.

TXMOM...has your started your daughter on the treatment for Bartonella yet? I hope so...my MCS has dropped since doing it...and, think about the areas that are shown to be affected by bart...the skin...the pleasure nerves..the brain!!!!!

The bart and the metals removal have helped me big time.

In fact, I couldn't even be outside last week in the sun because of a swelling of my optic nerve from the resulting herx...and guess where else bart hits!

I think....we are heading to a better understanding of this disease.

Trout

Kent

PS...I just want to add that.....given the current flow here....I need to re-iterate that I started to get beter FASTEST when getting the metals out.
 

My daughter had tested positive for Bartonella as well.

She's currently taking Mino and Zithromax. She had previously taken Doxy, Ceftin, 14 weeks for Rocephin IV. She couldn't tolerate rifampin, flagyl or cipro.

Would you say Bartonella has been treated?

Thanks for your help.

Marie
 

Tx Lyme Mom,

I think this is a matter that needs to be investigated much more closely. It is said that about 90% of sarcoidosis patients have pulmonary sarcoidosis. But as near as I can tell this may be an artifact of the way sarcoidosis is diagnosed. Apparently, if you don't have the sarcoid skin eruptions (and many don't), then the only likely way that you will be diagnosed is by accident when a chest Xray is performed for some other reason. But a chest Xray won't pick up evidence of granulomas in, say, your spleen. So is the 90% figure a reflection of reality, or of surveillance?

If granulomas are a common manifestation of Lyme disease, I doubt that they will be found routinely in Lyme patients until physicians/researchers start looking for them. Perhaps Dr. Marshall's D-ratio is a good starting point.

Others have suggested before that the common occurence of "lumps and bumps" underneath the skin of many fibromyalgia patients may be granulomas and it would be especially easy for docs to test this since the growths are so easily accessible.

It is my understanding that the inside of granulomas are not vascularized, and that antibiotics therefore penetrate the granulomas poorly.

Tx, keep bringing this issue up.
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

I would, if it's not too much trouble..like to be directed to those abstracts..they'll help in discussions with our Docs.

I'm trying to follow here..and probably shouldn't post till I give it a minute to stew..but this is moving fast..so here goes..

Is this to say that our immune system, if less encumbered, has the capability to attack the granulomas and maybe even the "cyst form"..if it exists?

Mo

PS: Note on Doc J..it is my experience with him that tells me is is careful, calculated and thorough..and also busier than any Doctor on the face of the earth with children's families calling all day every day with very serious situations.

To his incredible credit, he does not jump on anything...at the same time, he uses therapies that he feels will benefit freely.

He is seventy-five, and probably (no..definately) the smartest man on earth when it comes to TBD's and children's medical issues in general. He knows allot about our immune system in relation to the illness, and tracks and follows it carefully.

He may or may not feel the need to ask questions..may or may not mean he is looking at it..

If you've ever spent any time at all in his office, you'd know the odds of he or his staff having time to address faxed information on a protocol they are not familiar with from unknown sources are slim.

We may need to begin discussing during appts at first..

It would be a mistake to jump to any conclusions about what he may think reguarding this. Doc J does what thinks is right when he thinks it's right..all in the name of the wellfare of his patients (our children).

I hope to get feedback from him in person when we see him.

Mo

[This message has been edited by Mo (edited 10 May 2004).]
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

Mo
 

http://flash.lymenet.org/ubb/Forum1/HTML/024997.html

Next, here's the abstract pertaining to Bartonella, which was first posted by Lyme Wolf a few days ago. It's a real treasure. Thank You, Lyme Wolf, for finding it!

JAMA. 1998 Feb 18;279(7):532-4.

Hypercalcemia due to endogenous overproduction of active vitamin D in identical twins with cat-scratch disease.

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:
Case Reports

PMID: 9480364 [PubMed]

Comments:
Pay special attention to the last sentence under Conclusions.

The abstract above on cat scratch disease (Bartonella) also says that these abnormalities resolved withOUT treatment -- but remember that these lads were most likely NOT co-infected with Borrelia.

Scott has already posted some good abstracts about the myriad effects of Borrelia on TLR and other aspects of immunity, which I can't seem to drill into my over-taxed brain very well. This leads me, IMHO, to conclude that Bartonella might be secondary and opportunistic in patients already chronically infected with Bb.

My hunch is that if we can help the body to gain control over Bb, by using Benicar plus minocycline, that Bartonella won't be so problematic. There are lots of spontaneous remissions (ie, without treatment) in the literature for Bartonella -- that is, healthy folks seem to throw Bartonella off relatively easily.

That's why I keep hoping that all of these other issues of co-infections, as well as worry about treating the cyst-like form of Bb, etc., will turn out to be moot issues. Maybe or maybe not. Time will tell. Waiting to exhale.

[This message has been edited by TX Lyme Mom (edited 10 May 2004).]
 

quote:

---

Originally posted by Mo:
Forgive me..is Marshalls latest paper the one on sarcinfo..or is there another?Mo

---

Here's the link:

http://www.joimr.org/phorum/read.php?f=2&i=53&t=53

PS - Reminder: Scott said to pay special attention to refs. 28 & 29 in Marshall's paper.

I'm struggling to keep up, and I really value this direction and info..

I want top go over this with my LL, and Doc J, as well as my Bart Doc..these references will help.

Mo

[This message has been edited by Mo (edited 10 May 2004).]
 

I faxed to Dr. J the lastest published paper by Dr. Marshall.

As you cited in your post, Mo, he is elderly and is treating a great many very sick children.

He is not like most other doctors. He works long hours and is very thorough. We won't get a quick response from him as he needs time to careful evaluate this.

I am confident that we will get an adequate response from him, it just may take some time.

Scott, can you think of anything Mo can take to him or suggest to him, that would be helpful?

I believe you said, Mo, that you have an appt on 5/15?

Lets keep the faith and the persistency!

Thanks to both of you for your help with this.

Marie

You stated these concepts very well, I think. Therefore, I would like to emphasize what you said by re-posting it in its entirety and in boldface. Thanks for your illuminating clarity.

quote:

---

Originally posted by phage:
[B]> In other words, if it turns out that the real problem is Bb inside a granuloma somewhere in the body (bone marrow, or elsewhere), ...

Tx Lyme Mom,
I think this is a matter that needs to be investigated much more closely. It is said that about 90% of sarcoidosis patients have pulmonary sarcoidosis. But as near as I can tell this may be an artifact of the way sarcoidosis is diagnosed. Apparently, if you don't have the sarcoid skin eruptions (and many don't), then the only likely way that you will be diagnosed is by accident when a chest Xray is performed for some other reason. But a chest Xray won't pick up evidence of granulomas in, say, your spleen. So is the 90% figure a reflection of reality, or of surveillance?

If granulomas are a common manifestation of Lyme disease, I doubt that they will be found routinely in Lyme patients until physicians/researchers start looking for them. Perhaps Dr. Marshall's D-ratio is a good starting point.

Others have suggested before that the common occurence of "lumps and bumps" underneath the skin of many fibromyalgia patients may be granulomas and it would be especially easy for docs to test this since the growths are so easily accessible.

It is my understanding that the inside of granulomas are not vascularized, and that antibiotics therefore penetrate the granulomas poorly.
B]

---

exept in that when I mentioned Doc J's age, I never think of him as elderly..LOL..I can only dream of being capable of a fraction of what he can do ..and I'm in my thirties!!

I was citing his age as part of his uncanny wisdom and instinct in treating this illness.
Smart as a whip.

To tell you the truth, with ideas like this, his opinion on the theory will carry allot more weight with me than what any of the other LL's opinions happen to be. But..that's just me.

TX..and Phage..thank you for the ideas you post!

Mo
 

I would just continue to encourage Dr. J to look in to this and to contact Dr Marshall.

I'm confident that your persistence will pay off...keep it up.

Scott
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

quote:

---

Originally posted by free2reckon:
I don't use aspirin because it permanently inhibits the COX enzyme...yes, COX produces inflammatory prostaglandins, but it also produces protective ones as well.

That's why I use Lyprinol instead...it's has 5-LOX and some COX-2 inhibiting properties. Much safer and effective to use long term.

Scott

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[This message has been edited by hwlatin (edited 11 May 2004).]
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

These were Vit-D deficient mice in the abstract posted above. However, Marshall's work deals with hyper-(high) vitamin D "toxicity".

I'm confused and can't quite make the connection here. Or did I mis-read it?

PS - I'm editing now to say that I re-read your comments prefacing the abstract, which you posted on the previous page, and it makes better sense to me now. You were using that abstract as an example of how Vit-D, which is really a hormone, interacts with and impacts the immune system if the levels of Vit-D are dysregulated.

[This message has been edited by TX Lyme Mom (edited 11 May 2004).]
 

Marshall considers 1,25-D levels that are within the standard range to be too high, especially if the ratio of 1,25 to 25 is too high.

What criteria where these researchers using to set deficiency levels, and how would that translate to Marshall's "high" levels.

Seems like there is a whole lot more to be understood here.

BTW, my 25-D levels came back high according to Marshall's criteria, but in range. Still don't have the 1,25-D levels back.
 

Rosemary