I asked Ken Laasen, who moderates several excellent yahoo groups, and who himself had CFIDS as did his wife. They got well using rotating abx, starting slow and going up to herx, then when herx went away, increasing dose...and dealing with coagulation factors as identified by hemex tests (genetic vulnerabilities), also, she had to add in 4,000 units Vitamin D daily. Now they are completely recovered and off all abx more than a year.
This is the question he thinks is pertinent:
Who, on Marshall protocol, in saying they are completely recovered, is totally off medication for over a year?
The question is, does benicar function as an anti inflammatory and lack of Vitamin D depress immune function, all of which dampens symptoms, while perhaps low dose abx holds bacteria in check...but is this CLEARING infection so that people can go off all the meds entirely for good?
It is interesting that he and his wife both got well almost by the opposite approach...
It is something to very seriously think about, why is that so?
In addition to all my other questions on the other thread.
Posted by Keebler (Member # 12673) on :
before anyone goes on the Marshall Protocol they are supposed to have blood levels of Vit. D checked in a particular manner.
The MP is designed for those with HIGH levels of Vit. D.
It's my understanding that if someone's level of Vit.D is NOT too high they are not a candidate for the MP - or at least in the avoidance of vitamin D in foods, etc. Maybe the benicar or low dose abx would still hold benefit.
also of interest may be The Road Back Foundation www.roadback.org - with low dose pulsed abx minus the Benicar.
You pose some good questions here.
Posted by cleo (Member # 6646) on :
There is plenty of evidence that higher dose vitamin d acts as an antibiotic preventing tuberculoisis,breast cancer and others. Isn't it possible that by cutting out all vitamin d we take away the threat to any bacteria in us. That would mean that the bacteria would come out and having a grand old party so it be much more easily killed by lower dose abx. Just a quess.
Posted by mushroomman06 (Member # 13088) on :
On my last visit to the LLMD, we had new blood work on hand. My Vit D 25 Hydroxy was low 12.4 and Vit.D 1,25 Dihydroxy high 56.3
He told me no dairy products and try and stay out of the sun as much as possible. I really did not question him as his method of treatment has worked well for me. The post by Cleo puts some insight to his instructions.
I sure miss my forth of cup of milk on my fiber one cerel.
My LLMD follows a modified MP.
Posted by oxygenbabe (Member # 5831) on :
I hope Amy Proal, Lonestar, thankful and the others on MP can answer this question soon.
Has anyone supplemented with Vitamin D when levels are low and D-125 is high, and monitored whether it normalizes?
Posted by dguy (Member # 8979) on :
quote:Originally posted by oxygenbabe: Has anyone supplemented with Vitamin D when levels are low and D-125 is high, and monitored whether it normalizes?
I did. Didn't matter how many thousands of units of D I supplemented because it would be rapidly converted from 25D to 1,25D. This is because the conversion happens extra-renally, that is, beyond the body's normal feedback mechanism to keep D levels normal.
Posted by dguy (Member # 8979) on :
quote:Originally posted by Keebler: The MP is designed for those with HIGH levels of Vit. D.
That's something very important to remember. I would think it possible that (for reasons unknown to me) some lymies do not have the low 25D + high 1,25D, and for such people the MP may not be the optimal treatment.
Before I tried the MP, I recall looking at a detractor's web site. There he had plotted a graph (since removed) of the success rate of the MP based on vitamin D ratios.
According to his chart, a very low percentage of people who have normal 25D and 1,25D improve on the MP. But his graph of MP success rate increased dramatically as the person's initial vitamin D levels were more and more abnormal. My D levels were so abnormal, they were off his chart at the high-success rate side!
Posted by dguy (Member # 8979) on :
quote:Originally posted by oxygenbabe: The question is, does benicar function as an anti inflammatory and lack of Vitamin D depress immune function, all of which dampens symptoms, while perhaps low dose abx holds bacteria in check...but is this CLEARING infection so that people can go off all the meds entirely for good?
I think if this were happening, i.e. that the bacteria were simply being held in check, then the MP would not provoke a herx.
There are days I wish I didn't herx! :-)
Posted by oxygenbabe (Member # 5831) on :
Some say it was great and others say it was a dismal failure and dangerous.
These cannot all be "herx", and also, did everybody test their Vitamin D levels? It doesn't say.
Examples of failures:
"Marshall Protocol I followed this protocol very precisely for approx. 6 months, and it left me sicker than I have ever been in my life. When I asked for assistance or explanation on their website, they always said I was 'herxing,' and to stay with it, so I did--until I suffered extreme effects, such as temporary loss of vision, continuous nausea and lack of balance, hot and cold sweats, erratic blood pressure (and all that goes with it), and my doctor insisted that I stop the Protocol. I think my doctor saved my life."
"Marshall protocol A disaster. Significant weight gain, loss of libido, loss of muscle strength. At first there seemed to be improvement. Of great concern is the restriction of vitamin D over long periods of time, which is essential to the immune system, as well as bone strength. Benicar at high doses is asserted to be safe, but there are risks of aldesterone depletion, as well as the above side effects listed. I understand some people have lost almost 10% of bone mass after one year - bad news."
Example of success:
"Marshall''s Plan Works Most effective treatment I have tried. The decrease in swelling all over my body was easily seen after the first week. The common side effects of antibiotics were significant at first, but are minimal now. I feel "like myself" for the first time in 7 years."
My question again: who has been OFF the protocol for over a year and remained well?
In addition, what about the bone loss, weight gain, loss of libido, loss of vision, erratic blood pressure (most likely related to olmestartin?)
Again, I would like those like Amy who actually tries to discuss the 'science' of the protocol to try to get answers from Marshall about the above. It isn't all "herx".
Also, there may be other ways to calm down activated macrophages and limit 125D production for those with very elevated levels, that are safer than benicar. They call benicar safe but I read a bit more and very high doses are suggested and for folks who mostly have normal blood pressure. To me, that does not necessarily seem safe.
Again, if it works for those folks it's helping, great. But so many unanswered questions which should have been dealt with long ago on the site etc.
Also--hope to hear from someone who got well and went off abx and benicar and did not relapse.
[ 07. October 2007, 10:52 AM: Message edited by: oxygenbabe ]
Posted by oxygenbabe (Member # 5831) on :
Bump. I'm hoping the MP folks who have posted on here will answer the question in my first post.
Who has been off their medications for over a year?
Posted by dguy (Member # 8979) on :
The MP initially was used to treat sarcoidosis. It's only within recent years that lymies have been trying it too. Thus, it may be too soon for any lyme patients to have completed the treatment a year or more ago.
Posted by amyproal (Member # 13312) on :
Hi all,
I just saw this post. There is no need to speculate about the issues you are bringing up when many of the answers are discussed clearly on the MP site and on my website. I really encourage you guys to read some of the pieces on my site. Particularly the introduction to the MP: (please, please read it - it will help you better understand what's going on.)
The MP will work for patients no matter what there levels of vitamin D they display when starting the treatment. What happens in many patients with chronic disease is that L-form bacteria create protiens that bind and block the Vitamin D Receptor (VDR) - a fundamental receptor of the body that controls the function of the innate immune system. There are two forms of vitamin D - 25-D is a steroid that binds and deactivates the VDR. 1,25-D is a secosteroid and a hormone that activates the VDR. When L-form bacteria create proteins that impair the VDR from functioning properly, they dysregulate the feedback pathways that allow the body to keep both 25-D and 1,25-D in the correct range. In general 25-D goes down and 1,25-D goes up. When you are tested, these two forms of D are what you are tested for and yes, can be an indication that you are indeed infected with L-form bacteria.
However, there are many, many reasons why the D test turns out incorrectly. First of all, many perscription drugs and supplements alter the D levesl making them turn out wrong on the test. For example, when I got my D's tested I was on an anti-candida medication that lowered 1,25-D by 60%. I didn't realize that until later. Also, if the patient has any viral co-infections the level of 1,25-D will decrease because viruses affect the VDR in a different manner than bacteria.
What I'm saying is there are a thousand and one variables that can screw up how you respond to the test. Instead what patients should do if they want to see if the MP will work for them is do what is known as a therapeutic probe. That just means you start taking Benicar and the MP antibiotics. if you get a herx reaction that indicates you are killing bacteria. So the presence of a strong, steady herx reaction is the best way to know if the MP will work for you.
Once on the treatment, no matter what your level of the two forms of D are you can bring them into the correct range that will maximize the strength of the immune system over time. That's why patients avoid vitamin D in food and don't go into the sun. Those measures bring 25-D down into the range where the VDR can function at maximum capacity. For some patients it takes longer than others to do depending on the initial level of 25-D but all can achieve lower levels over time.
Also, the reason why Benicar works is because it binds and activates the Vitamin D Receptor. By turning on the receptor it increases the activity of the innate immune system. Consequently, it is the patient's own immune system that is able to kill the bacteria weakend by the MP antibiotics.
As you can tell, this is all quite complicated which is why there are many misconceptions about the treatment.
I have no idea how Ken Lassassen and his wife were able to recover while taking such high doses of vitamin D. According to the molecular modeling research that forms the basis of the Marshall Protocol, that would be impossible. So I can't comment.
Hope this helps a little!
Amy
Posted by oxygenbabe (Member # 5831) on :
If you can't comment, then perhaps you should't be promoting the protocol and insisting it is science.
In addition, saying that it works no matter your Vitamin D levels completely invalidates the whole premise of the protocol!
You need to address Kelli's points on the other thread.
Losing kidney function for 8 months is a very serious side effect.
It would be thoughtful if you would take the word "cure" out of your thread as requested.
By the way it is not lack of understanding that is causing others to reply to your claims.
It is seeing if you can validate your claims.
So far, they're not validated.
Posted by heiwalove (Member # 6467) on :
amy, i don't feel that you've directly answered any of oxygenbabe's questions regarding the MP.
and to insinuate that everyone who has failed the protocol simply couldn't tolerate the herxes or gave up too soon, is invalidating at best, and downright cruel at worst. just my honest opinion.
that said, i am very happy for your success. i just don't think the MP is a universal cure for this disease, and advertising it as such is inaccurate and potentially dangerous.
Posted by amyproal (Member # 13312) on :
I can't win on this site. Everything I saw turns into a personal attack on people. I'm trying my best and I'm trying not to hurt people's feelings. But I'm just telling you what my perspective is on the people who felt extremely bad when they started on the MP. I don't mean it to be offensive.
As per oxygenbabe's questions about viral coinfections
if you read the piece I've pointed you to several times which is an introduction to the science behind the MP, you will see an answer to your question about persistent viral co-infections.
The ability of CWD and biofilm bacteria to proliferate in the body is directly related to the vitamin D receptor (VDR).
Critically important to the body, the Vitamin D Receptor (VDR) controls the innate immune system - the body's first line of defense against infection. It's also responsible for turning on/off a wide array of genes and chemical pathways. One of the VDR's myriad jobs is to control expression of antimicrobial peptides (AMPs), proteins that kill bacteria, viruses and fungi.
Although casually referred to as a vitamin by some members of the medical community, molecular biologists have long realized that the precursor form of vitamin D (25-D) is really a steroid. Recent research has shown that levels of 25-D over 20 ng/ml can bind and inactivate the VDR, which subsequently shuts down the innate immune system.
Certain species of bacteria also produce proteins that can bind and inactivate the VDR in a manner similar to 25-D.
Consequently, people who are infected with CWD bacteria and consuming vitamin D are no longer able to produce the AMPs or turn on the innate immune system. This allows their bacteria to proliferate and spread.
When the innate immune system can no longer function, people have a very hard time keeping other pathogens under control. They often find that childhood viral infections reactivate, or that they acquire Candida (pathogenic yeast) and Mycoplasma as well. Thus, every person who starts the MP has a different mix of pathogens to kill depending on what microbes they have encountered during various stages of life. A person's unique mix of pathogens is often referred to as their ``toxigenic pea soup.''
and later:
Patients on the Marshall Protocol take a medication called Olmesartan (called Benicar in the United States), which is able to bind and activate the VDR by pushing 25-D and bacterial proteins out of the receptor. Patients also lower levels of 25-D in the body by avoiding the kinds of vitamin D present in various foods. These measures renew the body's ability to turn on the innate immune system and produce the anti microbial peptides. The immune system is then able to kill CWD bacteria and is once again able to manage viral and other co-infections.
So yes, people with lyme and other chronic diseases do pick up virsus. But once the patient kills the L-form bacteria that are deactivating the immune system by creating proteins that bind and block the vitmin D receptor, the patients immune system is strong enough to manage and get rid of the viral infections on it's own.
So bascially, treat the L-form infection first and the viral infections will take care of themselves.
Hope this helps!
Amy
Posted by oxygenbabe (Member # 5831) on :
No, Amy, you didn't understand my question.
If people had as their main problem CWD bacteria and defective innate immunity linked to incorrect metabolism/production of Vitamin D and its metabolites, then valcyte (as in Montoya's study) would not have taken some folks from bedridden to active life, not even one of them, (they are able as well to get off the drug and remain well so far). No, these seemingly reactivated viruses due to the causes you posit above, might be kept in check by valcyte but the CWD and inflammatory Vit D metabolites would still be making them very sickand the viruses would reactivate when off the valcyte.
So you haven't answered my question. You've just cited Marshalls *theory* about CWD/Vit D as the cause celebre of practically all chronic illness it seems......
You keep circling back to the *theory* of Marshall to explain away every question. It's not that you can't win on this site, its that you overstate the claims, generalize to everybody else, and dismiss serious side effects. Again, this doesn't negate your success so far with the protocol or lonestarticks etc.
Posted by micul (Member # 6314) on :
Nobody is off of the drugs that is having success with it. I posed that question to Trevor 2 years ago when I was looking into the program.
The thread turned into a very hot topic which he ended up closing, and then he pulled the thread off the site completely. People were volunteering to do all of the work needed to tabulate the statistics, but he didn't want anything done, and that was that. (because he didn't want anyone to know the truth).
Right after that, a lot of people were leaving the site, and he lost some of the key people that were helping to sell his program. Things have been very strict since, and all info/questions are tightly controlled.
It's still only a theory that anyone will be able to stop abx completely without relapsing
IMO,the MP is not effective against Lyme, Babesia, or any other prtozoa infection. There is no proof that it is getting rid of, or can potentially get rid of mycoplasmas or Bartonella. I think not.
Posted by B R H (Member # 12159) on :
quote:Originally posted by oxygenbabe: These cannot all be "herx"
Why not?
Posted by B R H (Member # 12159) on :
quote:Originally posted by oxygenbabe: So far, they're not validated.
So exactly what do you need to see for validation? Since very few of us, including yourself, are clearly not qualified to understand the underlying medical details, exactly what will convince you?
I have studied the MP for at least a year. You obviously haven't taken the time to further your understanding by spending time at the websites Amy listed. Have you tried posting specific questions at the Marshall Protocol website or the new curemyth1.org website?
If you can be specific & ask one question at a time & I'll take the time to provide my understanding but the best place to get the answers you seek is direct from the source. Are you afraid to try?
Posted by B R H (Member # 12159) on :
quote:Originally posted by oxygenbabe: No, Amy, you didn't understand my question.
What question didn't she answer? Every time she provides you with some information, you come back with something additional to "prove" without taking the time to investigate the information she provided. You seem to have a question with no endpoint.
It is good to be skeptical to guard your health, but you have gone beyond that to being unreasonable.
Posted by CaliforniaLyme (Member # 7136) on :
Oxy, I have always found you reasonable.
Posted by B R H (Member # 12159) on :
I have read of people off the medications without relapse. Don't expect to find many examples though because the treatment is still quite new & few people have tried stopping since they continue to see lifelong ailments resolve!
I agree that the MP website is not a place for free discussion. However, there is good reason for this. It is intended to be a clinical study website. Think about how difficult that would be without strict posting rules. Maybe try asking your questions again at curemyth1.org?
Here are the only statistics I've seen: Number of Patients/Numbers Reporting Improvement Rheumatoid Arthritis 8/7 Hashimoto's Thyroiditis 25/20 Osteoarthritis 5/4 Chronic Fatigue Syndrome CFS/ME 77/40 Cardiac Arrhythmia 15/9 Sarcoidosis 92/57 Type 2 Diabetes 5/3 Uveitis 18/12 Fibromyalgia 34/20 Irritable Bowel Syndrome 10/8
My understanding thru watching the video of Marshall's presentation to the FDA is that these "improvements" are not subjective.
I won't argue that the Marshall Protocol is a cure. I do think it is the lowest risk long-term antibiotic approach & has the greatest potential for cure for the most people with chronic Th1 inflammation.
What WOULD you consider "proof" that the MP IS "effective against Lyme, Babesia, or any other prtozoa infection" or that MP IS "getting rid of, or can potentially get rid of mycoplasmas or Bartonella"?
Posted by B R H (Member # 12159) on :
So what are the usernames of all these people that have "failed at the protocol"?
I don't think it is unreasonable at all that many, if not most, people would give up easily when fighting such a serious illness! Do you really think it should be easy or do you think the illness is not that serious?
Ultimately I doubt anyone here can "prove" success or failure to anyone. Right now all we can do is relate our experiences & it seems most detractors have zero experience with MP.
The immunopathology I've experienced on MP leaves me with little doubt it is killing whatever the tick injected into me! The difference is that with other treatments, the immunopathology stopped within weeks so there was no obvious reason to continue treatment. After 9 months on high dose antibiotic therapy, the negatives of continuing outweight the positives, so I stopped treatment. Of course I relapsed within months every single time.
With MP, I've repeatedly experienced immunopathology after taking an antibiotic dose - like clockwork, for 10 months! After each cycle I usually note an improvement as well. Can the detractors explain this?
Posted by B R H (Member # 12159) on :
What I mean is that it is unreasonable to "extend" questions with more questions. There is no endpoint. Nobody on Earth can answer the questions as posed here. It would be reasonable to ask a very specific question without adding to it each time it is posed. It would also be reasonable for the answer to be "nobody knows"!
The understanding of these topics by ANYONE here is minimal at best. I am convinced Marshall's explanation answers far more questions than any other theory I've read.
Posted by listenswithcare (Member # 10719) on :
My LLMD told me that the 1,25D test is unreliable. D25 is reliable
Robin
Posted by Brussels (Member # 13480) on :
I believe I got rid of lyme and coinfections, but still only 2 months totally symptom free. I always added 500 units a day of Vit. D for more than 2 years, since I got low values from blood tests sometime in 2005.
I kept adding it as supplement and taking sun as much as could. In the last months, I got fed up of daily intake of Vit D then decided to take a concentrated form of it, and take it less often, once a month or so.
I'm Selma from Switzerland, just posting from Belgium under another name. I'm pro Vit D then.
Posted by B R H (Member # 12159) on :
Have you considered that perhaps your low vitamin D test result was due to something your body was doing to address the root cause of your illness?
A deficiency does not necessarily mean supplementation is necessary. It depends on the root cause.
Posted by oxygenbabe (Member # 5831) on :
BRH, you asked me questions on two separate threads but I'll try to answer here. I really don't want to because I'm *done* with this topic, but for the record anyway.
1) I joined the topic not for myself but for others. The reason is because there is another protocol with very similar modus operandi:
charismatic leader who bans "dissenters", what I regard as groupthink, a quasi-scientific "model" for how the protocol works [osmotic shock by pushing saline levels to their upper limit, along with increased peptides from salt], statement that it is essentially a universal cure for chronic infections and all the symptoms they cause, similar warning that it is SO effective you may herx and therefore have to be very careful to slowly increase your doses because of the power of the protocol and the herx, similar misinterpretation of all side effects as herxes, including interestingly, interpretation of kidney damage as kidney "herx" due to high kidney pathogen loads.
The similarities are remarkable, with some differences (that person who puts out the salt/c protocol sells an ebook, from which he claims an operating LOSS; at least TM is not profiting financially).
Having suffered myself endlessly from my last attempt to do it, 4 days, and then unearthed all the negatives AFTER, all whitewashed from the site, I only wish somebody had done for *me* what I and others have done on these threads, which is to air openly all views including the serious risks.
Having said that...
You ask:
'Have you tried posting specific questions at the Marshall Protocol website or the new curemyth1.org website?'
No, because I will *never* *ever* *ever* try this protocol. So why not spend my time usefully researching things I might try that might help me?
You ask on another thread, Am I scared?
*Yes* *Yes* and *Yes*. Why? #1) I assume minocycline would not help me. It is different than doxycycline but enough in the same class and I did six weeks of doxycycline in early lyme and though it was moderately suppressive of the symptoms it was largely ineffective while at the same time being very toxic to me and practically destroying my digestion. In contrast, some years later on 3 grams of amoxicillin a day for tooth problems, my lyme symptoms started to respond immediately without any toxicity.
#2) I have serious fungal issues and that is my huge stumbling block. The long history of it would bore you but I am resistant to the azoles, which constitute most fungal drugs today, and can't tolerate lamisil (terrible liver pain...didn't want to risk it after a few days as some people had liver failure on it). I'm waiting for an oral echinocandin. On abx, even after a few days, I get massive fungal issues that effect my sinuses, ears, bladder, everything, I run low grade fevers, I get much worse food allergies, I am exhausted to the point of nonfunctional. After those six weeks of doxy I couldn't tolerate *any* carbs without body pain five to ten minutes after eating. It's not worth it. So I wait for an oral echinocandin and I'll see what that does. There is an IV one now that offlabel would cost me $4,000 a month...not an option. Maybe someday sooner or later there will be an antifungal that serves me, even works so well I don't need antibiotics (considering all the alternatives I use) or if I do, then maybe I will be able to tolerate amoxicillin.
I know several severely ill lymies who improved markedly on amoxicillin high dose. I hold it in high regard. So I don't even like the antibiotics TM uses.
#3) After harming my kidneys with salt/c and reading of Kelli's anecdote about a woman who nearly went into kidney failure on benicar and took 8 months to recover there is no way I would ever take that drug. Not that I would have in the first place anyway. I have normal bp. I don't like the whole concept and instinctively shy away from it. Everything about the MP would be wrong for me.
#4) I don't think TM has such new insights about bacteria. You mention bacteria essentially having sex and exchanging genes well they have ALWAYS done this and that was an insight from long ago, read some Lynn Margulis. Its just a way of life and nothing new or scary about it.
#5) If bacteria have dormant forms in which to survive they have always done this and if 60% of healthy "controls" are walking around with "L form" then you must consider that it is a normal phase of bacteria. And maybe for some folks this is bad who knows.
Do I agree that chronic inflammation is bad? Yes and no. Studies in mice with lyme--the ones who were bred to have no inflammatory response simply died from the infection. Those who did have inflammatory symptoms lived. It may be your body's second best choice because the inflammation will in some ways contain the bug, as will fibrin.
It's a devil's dance perhaps. I do think things like mangosteen, turmeric etc are interesting because they dampen runaway inflammation
#6) I love the sun. It's good for me. My VDR's (I've had them tested) are heterogenous meaning at my latitude in the winter I really don't get enough sun or Vitamin D. I'm convinced its very important and asking my HMO on Monday to test my Vit D levels (I waited until Oct as I was getting a lot of sun in the summer). I can't even bear the mere thought of staying indoors, no sun, dark glasses. I'd fall into a clinical depression.
Now, there's my personal view of the protocol.
I have no interest.
I wanted to protect others and I believe my questions on both threads brought many out of the woodwork who told the good, the bad and the ugly. Now if someone wants to investigate MP they can go over there with a very good broad perspective.
I don't want to see someone hurt through whitewashing of negatives.
ANd that's about it. Make what you want of this post, say I'm prejudicial, whatever. I really don't want to continue discussing this protocol and I think both threads give a full picture for the record and that is good enough.
Thanks.
Posted by CaliforniaLyme (Member # 7136) on :
Thank you thank you thank you Oxy!!! Good work.
Posted by B R H (Member # 12159) on :
Sorry to hear about your troubles with the Salt/C protocol, but it doesn't surprise me. You need to do far more homework.
Do you even know what you mean by saying that doxycycline & minocycline are "in the same class"?
There are important chemical differences between the two drugs & it's the chemistry that matters! Minocycline is "wider sprectrum" & twice as lipid soluble as doxycline so it kills more species with much better tissue penetration. This makes it much more effective on the central nervous system (brains & most nerve tissue). We are talking about something commonly referred to as NEURO-borreliosis aren't we?
Also, I assume you took doxycycline in the usual manner - probably 100 mg twice daily? That didn't work for me either.
These antibiotics work in part by inhibiting protein synthesis in ribosomes. Ribosomes are basically little factories that assemble proteins essential for bacteria reproduction as well as human cell reproduction! So it is important to take just enough antibiotic to inhibit bacterial growth while minimizing damage to the host (us). Fortunately we are also a lot bigger than bacteria & the antibiotics actually have a higher affinity for bacterial RNA than human (i.e., they are chemically more strongly attracted to the bacteria than to us). This is just one reason why the Marshall Protocol uses lower doses of antibiotics in a pulsed fashion (25 mg minocycline every other day, for example).
You might also consider that high doses of penicillin type antibiotics are actually used in labs to CREATE cell-wall-deficient bacteria to study! So while you may initially kill bacteria susceptible to these cell-wall-inhibiting type antibiotics, you may also be creating more resistant strains! Amoxicillin is also not a very wide spectrum antibiotic. High dose amoxicillin did not work for me. I herxed a few times in the beginning but then nothing followed by the common relapse when stopping. I tried amoxicilllin 3 times (nearly 4 grams daily for nearly a year the last time).
Again, how was it determined that this person you mention went into "kidney failure" due to Benicar? What lab tests were performed to confirm this diagnosis?
I had normal BP as well & my BP is lower on Benicar, but still normal. Benicar is a relatively poor medication for reducing blood pressure.
Trevor Marshall has never claimed to have discovered bacteria's ability to share plasmids. He readily gives credit where credit is due.
Of course bacterial ``sex'', as you call it, has probably been going on since the beginning of time. Consider that given all the species out there, perhaps you just finally ended up with the right (well, wrong) "mix" that is now making you ill. The combinations are essentially infinite.
Of course we all live with a large bacterial load every single day. Fortunately most healthy people simply have not been infected with the wrong combination yet and/or their immune systems have been healthy enough at the time of infection to stop things from getting out of control. It is the sequence of infection & the successive accumulation of species & their "offspring" that are responsible for many chronic diseases.
You may also be interested to know that borrelia (Lyme) has more plasmids for gene transfer than many other species. This is one reason it is such a particularly troublesome species to aquire. It can "share" so much bad stuff with your current bacterial load! For many, a borrelia infection is simply ``the straw that broke the camels back!''
If you like mangosteen juice, maybe also consider goji juice. It's your money to waste.
What the heck is a VDR test?
What makes you so sure that sunlight is good for your health at the moment? So will your view on sun exposure change if you find your 1-25 D level high compared to your 25 D? 1-25 D is the form that is used by your body. It is created by the skin when exposed to sunlight and also by the conversion of dietary vitamin D. The ratio of those 2 ``chemicals'' is normally tightly regulated by the kidneys. If the tests are done with the proper care & the ratio is not normal, it is a clear indication that there is something really wrong.
People on MP may or may not have to avoid light exposure. There is currently no way to predict a patient's response. It is simply safest in the beginning to avoid excess light exposure since excess vitamin D can actual ``fuel'' the inflammatory process. I have had some sun sensitivity but the only real difference my closest friends have noticed is that I wear ugly sunglasses & do not play outside as much. For me casual exposure to sunlight has not really been an issue but it has caused some problems when exercising outdoors. I guess my point is that this avoiding light thing always seems to be blown way out of proportion.
Posted by docjen (Member # 7510) on :
I was on Marshall Protocol for a year between 2005 and 2006. I had very high levels of D 1,25 (87.7) and low levels of 25D (24). I advanced through the second tier of abx in the protocol, and then just hit a plateau and made no more progress. My 1,25 stayed high, and my D25 stayed low (all the while I was completely avoiding Vit. D, sunlight, wore the NOIRS, etc etc). When I started to lose progress while still on MP, I stopped the protocol and started treating co-infections, AND supplementing Vit. D. It wasn't until I stopped MP and supplemented Vit D that my 1,25 levels came down (now 37).
I have been off of MP for more than a year and a half now, and have been treating coinfections.
There is just FAR too much established, peer-reviewed research showing the benefits of Vit. D against a host of diseases for a dietary restriction to be in order. Just my opinion.
Posted by B R H (Member # 12159) on :
The vitamin D topic is probably the most controversial & also the most difficult to understand. It is especially confusing in the media & when reading studies because often no distinction is made between the 25-D & 1,25-D forms. There are some good explanations here. In my opinion, supplementation is entirely unnecessary & may even be dangerous.
Speaking of studies, you may be interested to read this very recent "peer reviewed"(?) study from Duke University on vitamin D.
Regarding your test results, my understanding is that the vitamin 1-25 D test is meaningless once you start taking Benicar.
I doubt it is a coincidence that so many people with so many of these inflammatory chronic diseases have elevated ratios of 1-25D to 25D.
Posted by oxygenbabe (Member # 5831) on :
"Sorry to hear about your troubles with the Salt/C protocol, but it doesn't surprise me. You need to do far more homework."
This is exactly my point. If somebody like myself who easily handles research, could find very little negative on the protocol as it was whitewashed from the board promoting it, and as one other person severely harmed by it (who in utter delusional sincerity encouraged me to try it) was misinterpreting kidney damage and heart arrhythmias as "herxes" and encouraged to stay on it in spite of that and other new sympotms including carpal tunnel and sjorgren's, then this was exactly the purpose of these threads. Others are even less adept at research than me and they're ill and desperate and they needed a *full* airing of everything, and they got it. Everyone who submitted their reports was paying it forward and helping some sick lurkers who aren't sure what to do and might have ended up in trouble, or at least go in with eyes wide open since some such as lonestartick made a good case for the protocol working in some cases. But forewarned is forearmed and we gave this to them without them having to do months of research. Probably more people than we will ever know avoided trouble this way and will in the future since these threads are archived.
Nobody is perfect, and everybody is susceptible when chronically ill to the "promise" of a "cure". We need to protect people from these outsize claims.
Posted by docjen (Member # 7510) on :
Thanks, B R H. Having been to medical school, I am savvy enough to understand the difference between Vit D, and the secosteroid 1,25D.
The article you referenced related to Vit. D is interesting, but not peer-reviewed or evidence-based.
Regarding your statement: "I doubt it is a coincidence that so many people with so many of these inflammatory chronic diseases have elevated ratios of 1-25D to 25D." This is indeed very striking, and definitely cause for further investigation. Without investigation, it is an environmental fallacy, and we should be VERY careful to assign any sort of causation to what may be a spurious relationship.
Posted by B R H (Member # 12159) on :
Your understanding of vitamin D metabolism is uncommon in the medical community (the doctors most of us visit)!
I have no argument that caution is necessary & that the MP is not for everyone. It is a difficult commitment &, like any treatment for a SERIOUS disease, has risks which certainly may not be fully understood yet.
I based my choice to proceed with MP on ~3 months of full-time research specifically on MP (not including years of more casual research on other treatments). I am well "degreed" as well, not that it matters. Anyway, prior to this research, I had already came to the same conclusion as Marshall & many others before him regarding infection & chronic disease. The safety profile of Benicar is as good as it gets & the same holds for the antibiotics used, especially the combinations used long term & at the lower pulsed doses.
Historically progress in infectious disease has been painfully slow, in part due to "peer review" & subjective clinical studies, in my opinion. I feel very strongly this will finally change soon due to modern techniques only recently becoming available.
By the way, what was your username at the Marshall Protocol website? Also, did you take part in the forum reserved for medical professionals only at the MP website?
Posted by Truthfinder (Member # 8512) on :
Oxygenbabe, you've made some very good points here. Other have, too, and this is all helpful to someone trying to make decisions about treatment.
Oxygenbabe, did you get your Vitamin D levels tested?
I just got copies of my results back cone October 12th. I wanted my levels tested primarily for reasons associated with osteoporosis. *******************************
Vitamin D, 1,25 - Dihydroxy: Result is 49 pg/ml (range is 15-60) Vitamin D, 25-OH, Total: Result is 16 - LOW (range is 20-100) (see below) 25-OH, D3: Result is 12 (no range given) 25-OH, D2: Result is 4 (no range given)
Notes:
At the time of the test, I was not taking Feldene (Rx anti-inflammatory), but had been on it almost continuously for 5 months.
Daily intake of calcium from supplements was only about 150 mg., and D3 was about 200 i.u.; I was spending little time in sunlight.
Also, I am one of the few people here who have never been on any medications for `treatment' of Lyme or co-infections.
My only known co-infection so far is EBV, and I haven't had that tested for many years. My calcium levels were slightly low, also, for whatever that's worth.
My parathyroid hormone level test result was 42 (range is 10-65) ****************************
So, is this a typical result for someone with an L-form bacterial infection?
(I can't seem to find information on what levels should be if the Vitamin D/VDR receptors are functioning properly, although I've followed many of the links here....)
Posted by dguy (Member # 8979) on :
quote:Originally posted by Truthfinder: Vitamin D, 1,25 - Dihydroxy: Result is 49 pg/ml (range is 15-60) Vitamin D, 25-OH, Total: Result is 16 - LOW (
So, is this a typical result for someone with an L-form bacterial infection?
(I can't seem to find information on what levels should be if the Vitamin D/VDR receptors are functioning properly, although I've followed many of the links here....)
According to the MP folks the D ratio for "normal, healthy" people is close to 1:1; your values of 49:16 (about 3:1) are very rarely found in healthy people, but often found in those infected.
I've yet to find online any other good explanation for such unusual ratios.
Posted by oxygenbabe (Member # 5831) on :
Hi TF, I haven't taken my Vitamin D test yet. I go to my HMO on Monday and tomorrow I will have to assemble some research to convince her she should test my Vitamin D. I just want the regular test, and if my levels of Vitamin D are low, I'll supplement. PERIOD.
Posted by B R H (Member # 12159) on :
Which "vitamin D" are you referring to - 1,25D or 25D? Since you haven't had your levels tested yet, it makes little sense to speculate further, but what if supplementing with vitamin D makes no difference as seems to be the case with Truthfinder?
Despite supplementation, Truthfinder's 25D (vitamin D due mostly to dietary intake) remains low, yet 1,25D (vitamin D the body actually uses) is elevated (even above the Merck Physician's Guide maximum of 45 pg/ml).
Posted by B R H (Member # 12159) on :
So exactly what are the "protocals" & credentials for "acceptable" "scientific papers"?
Not that it actually matters to me, but since you speak so highly of qualifications, what are yours? In addition to these publications, Trevor Marshall is certified to TEACH medical doctors.
Please do share your complete "critic" of Bacteriality.com.
Please do explain how vitamin D really works for all of us. Be sure not to cite any references using "statistics".
Posted by B R H (Member # 12159) on :
Truthfinder, please consider posting your questions, including your test results, to the Marshall Protocol clinical study website. You may find the more focused & respectful atmosphere there refreshing.
Posted by oxygenbabe (Member # 5831) on :
I'm getting my 25D tested. If it's low, I'll supplement. I won't worry about hypotheticals and I probably won't measure it again for another year. I'm not going to focus obsessively on the Vitamin D, just take simple good precautionary measures.
If you look at the literature on 25D, depending on your VDR polymorphisms, you can be far more vulnerable to various cancers when your 25D is low.
Posted by B R H (Member # 12159) on :
minitails2, I'll answer some of the questions from your PM (pasted below) here:
I'm not sure which form of vitamin D you are referring to, but 1,25-D is the form used by the body. My 1,25-D test result is 58 pg/mL.
I do have occassional dizziness (not even one 2 second instance per day on average), almost always only after a specific amount of time has passed since taking a dose of antibiotics. There is no obvious correlation with BP.
I actually do measure my BP (and resting heartrate, weight, body temp, & many other things), on a daily basis. I have been doing this for many years as part of a daily journal I keep to track my training as a cyclist. My average BP has gone from ~110/70 to ~100/60 mm Hg since starting MP ~10 months ago. This is pretty much right in line with the Sankyo Dose Response chart for the "enormous amount" of Benicar I am taking.
My average body temp has gone from ~96.8 to ~98.0 degrees F. My TSH (thryoid function marker) has gone from over 9 to ~2.5 mIU/L (i.e., now considered normal). Yes, I do drive & would still be considered quite fit & active compared to the general population.
What are the "ER conditions" for BP?
I have been in "stage 3", well Phase 3 of MP, since August. I won't discuss all the specific antibiotics I am taking, but "Bactrum" (Bactrim?) is not one of them. What makes Bactrim "stronger" & exactly what do you mean by a "stronger antibiotic" anyway?
I'm so glad you're feeling better already, whatever works. I just hope you're careful since there is no research that I can find (maybe you know of some) or anybody else that I could find, that would consider very low amounts of vit. D in your system to be a plus. Make sure you have regular bone scans and don't let your blood pressure drop to ER conditions. Constant dizziness is not okay. I hope you take it daily, your BP, not weekly. I assume you drive, but you shouldn't while taking the enormous amounts of Benicar.
Also important! Take your ABX regularly. Even though it's a smaller dose, it is still like any long-term ABX, nothing new there, and will chip away gradually at lyme (hopefully). Also, you do have something to look forward to when you get to stage three and get to take a stronger ABX called bactrum. That has helped many people with lyme that have nothing to do with the MP at all.
It is obviously up to you to choose your treatment. You don't seem to know very much about what's behind it, though, and if it were me, I would be uncomfortable about recommending it to others. Please remember, the most important part of all this is you. Make sure you're not just focused on M's charisma (or so some say) but understand what's going on. Learn more about science and how the nitty gritty works since he likes to throw selective science around. There's actualy little that is cutting edge about the MP, he's using meds already on the market, he uses yet another twist on vitamins, and has made it a secret society. Maybe that's the new part?
Peer-reviewed science is the building block of how new scientific ideas tend to filter through. It's fine and normal to give talks about what you're working on, but that does not become a source or reference. It is not unusual before, during, and after publication, for other scientists to find tiny to giant (it's crap) problems. That's what happens, that's how it works. Why do you think LLMD's have had to struggle so hard? Marshall clearly isn't ready to publish an overall (book? that's my guess - not peer reviwed) study at this stage. I know he has data, though, that could be published. For several reasons, perhaps, including a number of cases of "negative" outcomes with the protocal "disappearing," his lack of ability to accept that there may be problems to be looked at, and his completely non-scientific way of finding his test group, may stand in his way. I hope he publishes a study, though, because everyone can learn from both good and bad.
It appears you have little awareness about how science is spread. The only person you believe in right now is the the guy with a Ph.D. in Electical Engineering who is wants to be a med researcher. I don' think he's trying to take advantage of people because he is a true believer. I hope you look around a lot more, though, in checking out your treatment.
May you continue to improve and stay safe above all. I think you're very sincere and you seem like a very kind person. Take care...
p.s. used to go through Grass Valley a lot on our way up to Tahoe. I hope it's not overpopulated - I used to pretend it was an "old west" town. With 7 people in the car, there was always someone to ignore, stories always helped! -------------------------------------------------------------------------------- Posts: 40 | From: california | Registered: Oct 2007 END minitails2 PM. Posted by B R H (Member # 12159) on :
What will you use for a "low" value for a vitamin D lab test result (assuming you are talking about the dietary D,25 form)?
What do you think the root cause is for the unusual vitamin D test results reported by many with chronic illness? Please do give this more thought before supplementing. Also consider having your vitamin D-1,25 tested at the same time.
PS. I'm not very good with analogies, but one comes to mind for vitamin D supplementation. If your car's gas mileage suddenly plummeted, would you simply add fuel more often or try to find the root cause (i.e., find the "leak")?
Posted by oxygenbabe (Member # 5831) on :
quote:Originally posted by B R H: What will you use for a "low" value for a vitamin D lab test result (assuming you are talking about the dietary D,25 form)?
I will defer to my doctor, both my PC and my holistic doc who is very smart.
quote:What do you think the root cause is for the unusual vitamin D test results reported by many with chronic illness?[/qb]
I don't know nor do I care. Sorry.
quote:Please do give this more thought before supplementing. Also consider having your vitamin D-1,25 tested at the same time.[/qb]
No, I don't wish to. Sorry.
quote:PS. I'm not very good with analogies, but one comes to mind for vitamin D supplementation. If your car's gas mileage suddenly plummeted, would you simply add fuel more often or try to find the root cause (i.e., find the "leak")? [/qb]
"
Unfortunately that doesn't help me much as I live in the city and don't drive. Guess I'd walk.
Meanwhile, go Dagoba chocolate!
Delicious! Posted by Truthfinder (Member # 8512) on :
Okay, O2babe - I'll have to check with you later on your test results.
Thanks for answering my question, dguy. I know I have seen that info on the ratios recently, but wasn't sure where.
I would love to see some actual test results of healthy subjects, and then results of those who had a true, simple Vitamin D deficiency, etc. for comparison.
If I may ask you and BHR, what were your D levels when you started? And how much have they changed since starting the MP?
BHR, thanks for the link to that website, but I don't know if I will post anything over there. I do not tolerate most drugs well so would probably not be a great candidate for any orthodox treatments. In my case, drug therapy would have to be considered an absolute last ditch effort.
My PCP doc raised his eyebrows when I asked for both the 25-D and the 1,25-D tests. I asked him to `humor me' and I would try to explain once I got the results. That's the part that should be interesting.
So, if I understand correctly, if I supplement with even more Vitamin D, it will never raise my 25-D level but will be converted to 1,25-D instead.
After I had these tests, I started on a new calcium combination supplement which just added another 1,200 i.u. of Vitamin D3 to my diet. And if I understand the literature correctly, this is not going to increase my bone mass, but make it worse? Because it is the infection - Lyme and/or co-infections - that are destroying my bones, not a lack of `nutrients', and the extra D will allow the infection to proliferate. (I hope I'm getting this right.)
You know, I do realize that there is a lot of `hype' out there about bones and calcium and Vitamin D, collectively and separately. And I have not yet read any studies or theories that have me totally convinced of anything.
One recent study I saw indicated that supplementing with Vitamin D was only recommended if you were fairly healthy - it would help prevent serious illnesses in a relatively healthy person. But if you already had a chronic illness, the additional D might make matters worse, depending on your illness.
But out of curiosity and for my own benefit, I thought I would do the tests, see what my levels were, and see for myself what changes take place over a period of a few months.
Posted by B R H (Member # 12159) on :
I'm not sure how a vitamin D deficiency would be defined because I don't understand how such a thing could really exist considering just how little light exposure to the skin is necessary for our skin to generate all the D our bodies need.
My initial test results were 1,25-D = 58 pg/mL & 25-D = 34 ng/mL. I was supplementing with vitamin D thru lots of D-added dairy products, a multivitamin, & lots of outdoor activity.
By reducing my dietary intake of vitamin D & light exposure, I was able to reduce my 25-D to ~19 before starting MP. Last test it was at ~13 ng/mL. You monitor your 25-D until it gets down into the teens or so. It will halve about every 2-3 months, but could take longer if you have lots stored up already (it is stored in body fat). I am fairly lean & continued outdoor activity to some extent early on MP.
There is no reason to check 1,25-D once you start MP. There are many hormonal adjustments that happen early in MP that make the result not very meaningful & it is not used as a guide for any adjustments during MP.
If your lab tests do indicate Th1 inflammation & since you are averse to trying medications right now, consider simply drastically reducing your exposure to light & dietary intake of vitamin D for a few weeks or so to see how you feel. I did just that & noticed encouraging changes in less than 2 weeks!
Maybe post your results & questions at CureMyTh1.org for comment by MP moderators. I guarantee you will get helpful information there regardless if you decide to do MP or not!
Also, if you can choose, I would highly recommend using Quest labs for vitamin D tests. The tests, especially 1,25-D, is very sensitive to proper handling of the sample. Quest's is known to handle samples properly most of the time but other labs are more lax.
Supplementing with vitamin D will probably raise your vitamin D-25 but also raise your 1,25-D. At least that is my understanding. You may want to discuss this more with your doctor or at CureMyTh1.org. Again, I really urge you to carefully consider your reason to supplement until you understand the root cause for any "deficiency."
It is definitely important to get enough calcium in your diet, but there is no need for more than the RDA unless you have a known deficiency.
There was also recently a request for bone scan test results for people on MP at the MP website to collect data for the FDA. When I looked over the responses, I didn't see any evidence that bone loss was an issue.
You'll get far better explanations than I can provide for questions about calcium & bone health at CureMyTh1.org or the Marshall Protocol website. These questions come up a lot there!
PS. In my opinion, SUPPLEMENTS, including vitamins, are drugs! Our bodies work best with natural minimally processed wholesome foods!
[ 29. October 2007, 03:56 AM: Message edited by: B R H ]
Posted by barksplinter (Member # 13249) on :
My wife tried MP, as did several of her friends. My wife is a very bright medically retired nurse and extremely disciplined person by nature. She was VERY strict on the MP.
After 6 months she had progressed to 15mg every other day and EXTREMELY CONTINUOUSLY sick. The MP board was pretty judgmental... and that is being kind.
NONE of her friends were helped at all by MP. I only know one and I know SHE was very strict also. My wife feels it probably did irreversible HARM!
If MP helps some people, fine; but it is far from a cure all. I feel the "Just push through the HERX" philosophy is a big problem for this and other protocols... a philosophy also advocated by many LLMD's I might add.
If it were simple, few of us would be here. If it were simple, many mainstream doctors would be on the bandwagon allowing us to [rightly or wrongly] put the disease in their hands.
Let's face it, most doctors just do not want to deal with diseases this hard and complicated... especially with the practical time constraints of health insurance. A Myocardial Infarction in progress is far far simpler to treat.
Posted by B R H (Member # 12159) on :
What was your wife's username on the MP website?
What was it that she progressed to 15 mg of? That must be a typo because there is no prescription you take in such small doses on MP.
I agree completely that IT is a complicated & serious disease that most doctors don't want to deal with. The real question is what IT is & is it possible to get rid of IT without feeling quite ill for quite some time!
It would be great if there were better objective measures of progress than herx! I am fortunate to have encouraging thyroid test results to keep me motivated.
Posted by B R H (Member # 12159) on :
So why have the heart palpitations resolved? Why did they occur at very specific times after taking antibiotics? My bet is they were immunopathology, just as predicted by Marshall.
The dental crud is unexplained, but completely resolved on it's own. Others have reported the same thing. I agree it is bizarre to say the least.
Apparently you didn't read enough to see that I was in an accident about 10 years ago. Most of my molars were cracked as a result. My dentist warned me they would eventually all be trouble. The one that cracked was the 2nd to go since that accident. That one in particular also had a very large & old filling that my dentist warned was trouble even before the fall.
MP has not been easy, but I'll take getting better over getting worse any day! There were times during the first 8 months where I was not sure I was doing the right thing & I still wonder. It's in the best interest of my health to continue to be skeptical. The results simply speak for themselves. Apparently, "no pain, no gain" seems to apply to any treatment producing results.
So you "feel that this approach may or may not be more or less dangerous than other approaches." Sounds like double-talk to me. Exactly what is your position on MP?
I completely disagree that "early indications aren't good". The HUNDREDS of patient reports I've read show progress in the vast majority of cases. You are seeing a TINY fraction of reports on the MP website unless you are a member in Phase 2/3. Also keep in mind that the goal with MP is cure, not palliation.
I am very familiar with peer review. I just don't put as much stock in it as you apparently do. I prefer to use my own brain rather than rely on the Idiocracy.
[ 30. October 2007, 11:12 PM: Message edited by: B R H ]
Posted by Truthfinder (Member # 8512) on :
Well!
One thing I've discovered it that when it comes to understanding all this stuff, I feel like a complete moron.
It appears that perhaps the most important things for me to know are these (based on some of the studies out there):
......current research has demonstrated that osteoporosis and osteopenia are often the direct result of infection with L-form bacteria which produce inflammatory cytokines and inactivate the Vitamin D Receptor .
....Recent research has shown that levels of 25-D over 20 ng/ml can bind and inactivate the VDR, which subsequently shuts down the innate immune system .
....Also, when levels of 1,25D rise above 42 ng/ml , calcium begins to be leached from the bones , a process that results in osteoporosis and osteopenia.
I've been all over the ``Bacteriality literature'' and other places, taken notes several times, and yet I can't seem to keep the basics in my mind, and certainly not well enough to explain any of this to my PCP (I see him this afternoon).
I did gather some notes for him to explain my interest in the D, calcium, and parathyroid levels. Although my main concern is the osteoporosis factor at this point, researching this just tied right in to my suspicion that it was Lyme & Co. responsible for my bone loss, and not deficiencies (intake) of any vitamins or minerals.
I do tend to think that this is true.
What still holds me back from being convinced are stories like that of ``gwenb'', who has posted about her improvement by supplementing with Vitamin D (this from another thread):
``I started supplementing with Vit D3 8 months ago and the result was a DRAMATIC improvement in my symptoms....
``I am extremely glad that I researched Vit D and then decided to supplement with it. The quality of life I currently enjoy (I had already radically modified my diet and take numerous other supplements - but when I started taking Vit D the improvement in my symptoms was quite astounding...''
I think Luvs2Ride posted improvement with additional Vit D, also.
I guess the MP theory would say that it is the steroidal quality of the additional Vit D that is causing this person to feel better; meanwhile, the CWD bacteria are proliferating and will eventually cause a worse infection?
**sigh** Very hard to understand the discrepancies.
Minitails, some of us have lost faith in science, in general, and peer-reviewed studies and research in particular. When Marcia Angell, a former editor of the New England Journal of Medicine, is concerned about it then I tend to be, also.
And I read that a few years ago, the NEJM basically gave up trying to find truly independent doctors to write and review articles for the journal. Then are the ``ghost writers'' who write articles for the esteemed doctors because the docs have no time to do it. The whole procedure isn't looking very `unbiased' at the moment.
I don't want to divert this thread, but perhaps a different thread would be in order in the near future - started by those of you who understand and trust the system - about why peer-review is so important, how we know when to trust the findings, the reviewers, etc. Just a thought. I know enough to know that I don't know enough about this!
Posted by B R H (Member # 12159) on :
I too felt overwhelmed & excited with all the information I suddenly had available after spending more time at the Marshall Protocol website. You don't have to have any interest in MP at all to learn a TON there & by way of all the references & links provided!
You have obviously chosen a fitting username - keep searching for the truth!
Posted by Truthfinder (Member # 8512) on :
Well, BRH, I don't know if ``excited'' is the word I would use, but I do know what you mean.
To be honest, I was hoping this Vitamin D thing would be a lot like buying a toaster - you just plug it in and it works. I love researching certain things - for some reason, this isn't one of them. Perhaps it is too similar to the ILADS vs. IDSA controversy - both sides believing they have the evidence to support their point of view.
Yes, I will have to do more research because my doctor explained my DEXA scan results to me more thoroughly. I have the bones of a 90-100 year old woman, and I'm only `on the cusp' of age 57. Just one more good reason why NOT to have undiagnosed Lyme & Co. for about 50 years...... I really can't afford to get this wrong.
Posted by gwenb (Member # 7217) on :
Truthfinder
If you have the bones of a 90-100 year old woman you are likely very vitamin D deficient. Calcium isn't absorbed correctly without adequate vitamin D levels.
I would also exercise a word of caution regarding the Marshall Protocol which I believe is potentially very dangerous: Why is it that the MP contradicts the results of hundreds if not thousands of peer-reviewed medical studies regarding the very real benefits of Vitamin D?
At one time I was contemplating going on the Marshall Protocol, but before I did I spent several days at Pubmed researching Vitamin D - which I knew almost nothing about. After doing so I was convinced that the multiple and extremely well-documented benefits of Vitamin D, and the fact that many N. Americans are grossly deficient, meant that I should be supplementing, rather than restricting the already paltry amount of Vitamin D I was obtaining from natural sources.
There is so much extremely compelling evidence regarding the incredible beneftis of Vitamin D supplementation and reducing cancer, improving MS, kidney disease, tuberculosis, high blood pressure etc that at the very least people owe it to themselves to read several peer-reviewed articles about the benefits of Vitamin D before engaging in the Marshall Protocol - which is unproven, controversial and potentially dangerous.
I have provided links to peer-reviewed Vitamin D studies in my other posts on this subject.
Gwen
Posted by B R H (Member # 12159) on :
If the evidence is so overwhelming that vitamin D increases bone density, why are so many on MP reporting their bone density loss has actually stabilized or improved?
No argument that calcium is very important for bone health. So is phosphorous. However, patients with unusually high 1,25-D values (relative to 25-D) obviously have all the vitamin D they need. Just ask their kidneys!
Didn't peer-review prove the Earth was flat?
So what is the root cause of your vitamin D deficiency?
PS. Perhaps you haven't seen this story yet. Even the NIH seems to think the peer-reviewed research on this subject is not so clear after all.
[ 01. November 2007, 01:25 PM: Message edited by: B R H ]
Posted by B R H (Member # 12159) on :
My point in asking for your qualifications was merely to point out that you are COMPLETELY unqualified to offer scientific analysis of Marshall's work. I don't feel I'm any more qualified although I do have direct experience with the protocol & have studied the details far more than you have. My only goal is to expose more people to what I believe is VERY promising research & a treatment that is producing positive results that are not easily explained with conventional medical "wisdom."
My "degrees" are in computer engineering, mathematics, & computer science. My first job out of college was as a research engineer. I was the first non PhD to be hired to that position at that particular company so I must have done something right in school (being #2 in my class probably didn't hurt). The work I was involved in resulted in MANY papers & patents, so I am quite familiar with science & peer-review. I work as an independent consultant now.
You'll need to answer far more of my questions (above) before I answer any more of yours.
Posted by Truthfinder (Member # 8512) on :
Sheesh, I haven't been able to post to this thread for 2 days.
BTW, I did use Quest to do my Vit D tests, and I made sure they knew they had to freeze the sample(s), etc.
gwen, thanks for your post. I wish the evidence in my own case could substantiate one point of view or the other.
For instance, apparently I started losing bone even when I was engaging in outdoor activities and getting much more sunlight than I am now - that was way back in about 1990. And I was eating more raw foods then, too.
I'm not entirely sure the MP theories actually DO contradict the various studies out there, because what we don't know about all those studies is how many people were involved who had Lyme, sarcoidosis, etc. Probably not very many. I'm not sure this peculiar Vit D/mineral dysregulation occurs that frequently.
I looked at my recent mammogram results and it mentions `benign calcifications are unchanged'. Well, `calcifications' in my breasts just shows that I'm depositing minerals in soft tissue where it doesn't belong. This is mentioned in the MP theories.
I've developed a bony growth on my L wrist bone in the past year. Clearly, my body's regulation of minerals and what to do with them is out of whack.
None of this means that it is excess Vitamin D causing the problem, nor that I have a deficiency. I'm just trying to see what obvious evidence I have right on front of my nose.
I have to tell you that since adding the additional 1,200 i.u. of Vitamin D (and more calcium and some strontium) about 3 weeks ago, I've been able to stay off the anti-inflammatories for my back (knock on wood). And I do feel better, generally.
(I'm a bit unhappy that these new calcium supplements have proven to be somewhat constipating, and the company advertised them as `non-constipating'. But this has been my experience with every form of calcium out there.)
Thanks, minitails. Sorry your mom has been through all this. I broke my pelvis in July, and I broke it trying to prevent myself from falling backward. I fell over anyway, but had I not done what I did, I might have broken my back and I wouldn't be here. That was my big wake-up call.
My doc is willing to re-test my D levels in a couple of months. We'll see if my 1,25-D goes up and if there is much change in my 25-D level.
Meanwhile, I will get a little more diligent about using some natural bug-killer supplements and remedies. And detox. And exercise. And pH balance. Basic lifestyle improvements.
Also, there was a study years ago that I read about in my Alternatives newsletter that found that women who kept their pH levels in the alkaline range were able to build more bone mass than any of the other women in the study. It has been years since I read that so I can't remember all the different protocols tested.
I do think dealing with the infection is the ultimate answer. That was the goal all along, of course, but it just became a lot more important.
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