My name is Amy Proal. I write for the science blog Bacteriality.com. I've had severe chronic fatigue sydrome (and probably Lyme disease since i was never tested but had all the symptoms) for the last four years. But I'm here to tell you about a medical treatment called the Marshall Protocol that is completely CURING the disease. I went from bedridden two years ago, and now am living a normal life - I'm working and even had the time to start my own blog about the treatment. If neccessary, I may even quit my job so that I have more time to write about the Marshall Protocol. That is how strongly I feel people need to know about this treatment. Many people with lyme are reporting improvement and recovery. There are thousands of people on the treatment.
Here is a fascinating interview with a woman recovering from Lyme on the MP:
The Marshall Protocol uses pulsed, low-dose antibiotics to wear away at L-form bacteria, bacteria that have changed form and lack cell walls, making it easy for them to live for long periods of time inside the cells of the immune system. Scientist have known about these bacteria since 1895. You can see many pictures of them on my site.
The key to the Marshall Protocol is that only low-dose, pulsed antibiotics can wear away at these mutated forms of bacteria. The low concentrations of the antibiotics are able to penetrate inside the cells where the bacteria hide. High dose antibiotics can't achieve this.
Also the treatment uses a medication called Benicar to activate the immune system. The medication binds the receptor that controls the activity of the innate immune system and activates it. This means that each person's OWN immune system, with the help of the low-dose anitibiotics can gradaually wear away at the L-form bacteria. The death of the bacteria results in a "Herx" or immunopathological reaction where the body must deal with the effects (toxins, cytokines etc) of the dying bacteria.
It's not an easy treatment and takes several years to complete. But if you truly want to get your health back..it works.
Here are some more interviews with patients reporting recovery on the treatment.
Marshall Protocol.com is a study site in which patients are part of a Phase 2 sutdy. Anyone can join and participate. The treatment is free and questions are answered by members of Autoimmunity Research Foundation, a California-based non profit group.
Please take the time to learn about the MP. It is the decision that will change your life forever and lead you back to complete health.
Feel free to ask me questions!
Sincerely,
Amy Proal [email protected] Posted by SForsgren (Member # 7686) on :
So why have most of the major LLMDs that have tried it at one time or another abandoned the MP and generally found it to be disappointing? I think that proposing the MP as a cure is a bit misleading. I am not suggesting it may not help some people and attempt to be open to all of these therapies - who knows - maybe I will consider it at some point, but I think that we need to be realistic with any claims...
Posted by BorreliaBrain (Member # 7603) on :
Well, well... so what about the Marshall Protocol after all?
It comes up on this board every few months. I have read some truly amazing stories from people on it, and my previous LLMD wanted me to try it, as I was only worse after two years of orals.
I am on IV now, and steadily getting sicker and sicker frankly. I've herxed, and I've gotten worse, and the high dose IV so far is seeming to make me just plain worse.
It's a subtle difference, but many get better with IV after several months to a year, but I don't think that's what's happening to me (although could be Lyme negativity here, I don't know).
The issues with the MP I've heard is that some people do not tolerate the Benicar, some get very sick from it, and some can't take the herxing. Plus staying out the sun for 3 years is really extreme.
Also, it seems that any negative reports are routinely quashed on the MP board (which may be necessary with infection-induced negativity, I don't know). I hear about some serious fights on there.
But it certainly is something to think about. Those who do report success report feeling soooo good. It's hard to ignore...
Plus, reading that Dr. F herself, from NJ, is actually putting some patients on the MP really makes one think, because she is very good, and very bright.
Thanks for giving me something to think about, although I should probably at least TRY to survive the 8 months of IV before I totally give up...
Congrats on your healing, and hope you continue to get stronger and stronger.
BB
Posted by amyproal (Member # 13312) on :
Hi Scott and BB,
Thanks for your interest. I'm not trying to say the MP is easy. It's really difficult to manage the herx, but it CAN be done. You can adjust your dose of antibiotics so that the reaction only remains as strong as you can (or wish!) to tolerate.
A HUGE problem (and I did this at first) is that people push themselves too hard. The MP seems so long. They take more antibiotics than they can tolerate. The herx goes way up. At this point many people quit, and it's a shame. The key is slow and steady, which I admit is hard because, hey...everyone wants to get better as soon as possible!
If you have a serious case of Lyme the first year or so is just herx, herx, herx. Many people get discouraged. Most people don't report much improvement until at least a year or two into the therapy, sometimes more. So you have to hang in there because then things start getting better, and better....One thing I can say is that the treatment isn't any worse than having the disease in the first place, or doing some of these difficult IV therapies.
And yes, after a few years you are CURED. Truly. No more bacteria. No more disease. It's that simple.
Scott, maybe you've heard of people that didn't stick with the MP, but c'mon, there are tons of people with Lyme on the board who are absolutely happy with the treatment.
There really arn't any fights on the board anymore. I know few years ago there something, but i've never had any problems whatsoever. Actually, I've made so great friends on the board and find the support to be amazing.
Best, Amy
Posted by BorreliaBrain (Member # 7603) on :
Also, my first LLMD was telling me about another doctor up north who is doing a less extreme version of the MP, with less of a dose of Benicar and higher abx, and that he was seeing LESS herx reactions that way and better overall healing without the agony...
My doc wanted me to do that. I elected to go with heavy-duty IV instead, but I am having troubles on it now (IV Doxy, it's killin' me - herx? or worse?)
I dunno, I will try to push through, but I am intrigued. It's certainly worth looking into if you are failing on abx... just my 2c. Though I've heard some cannot tolerate Benicar... hmmm.
Posted by CaliforniaLyme (Member # 7136) on :
Welcome Amy!*)*)!!
I've seen your blog. I am glad you are doing well. I really am. But trumpeting the Marshall protocol as a cure would be like me saying IV Rocephin cures everyone, it doesn't. Wish it did! I echo BorreliaBrain & Cavey! There is no one-size-fits-all with Lyme/TBDs!!!
Locally we have had 2 people try Marshall.
Both guys.
1 says "Jury is still out."
1 says he had bad experience & it was deleted from website.
So our of the two locals who have tried it- neither was cured- one did badly and one may be helped but after a YEAR of his life devoted to the protocol can't even give a definite opinion YET on whether it was helped him! So...
a cure? No.
I HOPE it does cure SOME people. I know IV Rocepihn helps the vast majority of the people who go on it, but I don't go around saying it's the cure for all Lyme, because it's not. It worked for me though- thank goodness.
Let's all keep sharing what helped us, including you Amy, I am glad you are here.
Welcome, Truly,
Posted by SForsgren (Member # 7686) on :
My understanding is that a key piece of the puzzle is D 1,25 vs. D 25 levels. If 1,25 is not significantly elevated over 25, then one may be less of a candidate for the MP and it may convey fewer benefits. Is that a reasonable understanding? Should we be talking about those things that may select whether or not someone is even a good candidate before we suggest it works for everyone?
Posted by tosho (Member # 10191) on :
Amy, What about coinfections??? Does Marshall Protocol hit coinfections? Lyme Disease Complex is much more than 'just' borrelia.
Posted by memphisbluesman (Member # 11570) on :
I agree, Scott. That's the information and results that I would like to see discussed more openly as well. Over on the MP board, I have yet to see them say "You don't need the MP". They just cut and paste a repsonse that they have used a 1000 times and say you need the MP ragardless of the test results.
I sincerely wish that they had data showing how people fared based on their initial 1,25-D result. Some people are barely elevated and probably have other isses that are primary causing poor results on the MP.
I actually had my 1-25-D tested out of curiousity and it was extremely high(95). But because of all the horror stories I am too scared to really consider it. Now If they could show me how people with 1,25-D over 60 resond better then I would be more inclined. In 4 years, the MP board has yet to show me any solid proof as to what subsets of patients improve and which don't. They also have the same 4 or 5 people posting in the "Succes Stories" section over and over again. And even those people are not even close to "Cured". In Fact a lot of them seem to be still worse off than many of us.
Posted by billclo (Member # 12939) on :
I can report that I've been treated for 8 months with a variant of the MP with GOOD results.
My doc used Benciar (worked up to 80mg/day), Cefzil (Minocycline was his first choice, but I had a possible drug reaction to it and had to stop it), and Tindamax after a couple months.
However, he prefers to supplement to get the 25-Hydroxy levels up. Mine were initially 17 (very low). 1.25 + 25 Hydroxy was 26.9...
He is of the opinion that you should get the 25-hydroxy levels UP, and that the Vit-D depravation is a bad idea.
Last blood work back in June was 25-hydroxy of 55, unfortunately I don't have the 1.25 + 25 Hydroxy in front of me, but it was barely changed at all as I recall.
I'm off all abx 8 weeks now, with no recurrence of symptoms, thank God.
Posted by Lonestartick (Member # 2151) on :
Amy,
I remember you from the MP website. I rather doubt you will remember me, because I was one of the earliest Lyme patients to try the MP, so I may have been a bit before your time. I credit the MP for giving me back my life after disabling Lyme and co-infections.
The jury is still out yet as to whether or not it will be my ``cure''. Although it feels more like a ``cure'' than anything I have ever experienced, only a lot of time will tell whether or not this is really it. The more time goes by, the better I feel, but until I'm many years beyond relapse, I just won't know.
That said, I'm enjoying the fact that it really does feel that way and I really do feel well. Like most late-stage/chronic Lymies, I am extremely cautious (and also put off) when I hear the ``cure'' word tossed around. That said, my D metabolism, light and sun sensitivity have all normalized, as has my health and energy level...
So, while I consider that somewhat miraculous, even I am not ready to say I'm cured; although, I am thoroughly enjoying a level of health I have never before experienced. The best part is that I finally seem to have health I can actually take for granted.
After spending decades being ill, that means a lot to me, especially now that I can more than keep up with my healthiest friends and family members.
Thank you for sharing your story and your results. I'm looking forward to checking out your website. Please keep sharing.
Be well. Posted by oxygenbabe (Member # 5831) on :
Why would low dose antibiotics kill these bacteria and high dose would not? Why would low dose enter a cell and high dose would not? I don't understand any biological mechanism by which the cell would reject the antibiotics. Whatever is going to enter the cell will enter it. I clicked on the various links but did not see any backup research/theory for this statement. It was simply a statement.
In addition, I am *really* glad for those who got their health back including lonestartick I remember her mom posting here often. However, others got very ill even dangerously ill on the MP. Those stories are not allowed on the site. I've read a few at the yahoo group Infection & Inflammation. One person nearly died!
Posted by CaliforniaLyme (Member # 7136) on :
It's interesting- I wish we could explore, too, what the differences are as to who succeeds and who fails- it is so hard because there are so many variables!!
Tissue types- HLDR 2 and 4 and all the others Diseases caused directly by various bugs- Anaplasma Babesia Lyme TBE viruses Mitochrondrial bacteria just being discovered? fungi/molds? bodily processes like yeast gone awry as secondary process casacde Secondary cascade presentations from diseases-
So many things!!!
Nice thread, thank you Amy-
and good questions, Oxy- remember the folks at Roadback.org and the folks at rheumatic.org following the teachings of Dr. TM Brown (not LLMD or maybe the original*)! have been using
low dose antibiotics
for rheumatic diseases for decades!!! the reason low dose- because knowing they plan on being on them for so long to minimize adverse events/side effects- my understanding anyway- and also good PR frankly, at roadback and rheumatic.org, any dose is referred to as "low dose"*)! although the ones they publicly name usually fit that description*)!
Anyway, lots of us on similar paths, some paths different names but same thing*)!
The Roadback people are very organized and spend all their efforts toward getting scientific trials going- my angel LLMD went to a conference of theirs and was very impressed with them!!!!!!!! THAT was when he relaxed about longterm abx- because he met people there who had been on antibiotics for 20-30 years! who were all doing great and who had terrible rheumatic diseases without abx-
anyway, take care all, Sincerely,
Posted by oxygenbabe (Member # 5831) on :
Perhaps it's wrong to say "more effective" and that low dose can get into the cell when high dose can't. That's what bothered me.
Perhaps low dose is much better tolerated (remember my asking about low dose rocephin that's working for barksplinter's wife) and inhibits the bugs, reducing their population over time.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Lonestartick: Like most late-stage/chronic Lymies, I am extremely cautious (and also put off) when I hear the ``cure'' word tossed around.
No kidding!
Posted by amyproal (Member # 13312) on :
Thanks everyone for your interest.
Cure is a somewhat provocative term, but I don't use it lightly. Why do I use it then? Because the MP site, and the success stories in particular are filled with people who say they are ``better than ever.''
On my blog Bacteriality.com, I interview MP patients. Do you know how many patients I can choose from? The last person I interviewed, a 71 year old Lyme patient, told me she felt like she was in college. Most all the patients who do this treatment and follow through on it do not equivocate about their level of wellness.
The MP site has 5,000 members, 200 medical professionals on the site, 34,000 visitors each month, and 500,000 page views per month. Either a lot of people are highly suggestible or....
There's no hiding the fact that the MP is exceedingly ambitious. It's hard to convince people that a single form of therapy can help patients with a variety of diseases. But patients with fibromyalgia and Lyme and CFS have the same tell-tale reactions, when a number (yes, there are a lot now) of them gotten to the point where they can finally say, hey, my health is better than ever.
I don't differentiate between different kinds of Lyme or, frankly, different ``autoimmune'' diseases. If you can generate a herx with the MP, there's a good chance it can make you well. I've talked to too many people with a variety of illnesses to think otherwise.
One of the biggest stumbling blocks towards wider acceptance of the MP is the fact that it is just so darn complicated, and that's why I make an effort on my blog and in places like this forum to communicate what the MP is all about.
In addition to my experience talking to people, I happen to have a reasonable appreciation of how the MP works on a molecular level. All the elements--the Benicar, the vitamin D abstinence, the specific antibiotics, all work together. Frankly, it's frustrating when I read here, for example, how patients and their LLMDs are modifying the MP without regard to the basic concepts of the treatment. There is also only one version of the MP that works. If other variations of the MP generate less herx it just means that the patient is killing less bacteria.
Bill: If you are taking vitamin D, what you are on cannot be called the MP. The treatment simply will not work. High dose vitamin D completely reverses the actions of Benicar. You probably feel good because you aren't killing any bacteria. At this stage of the game you should be feeling a strong herx.
Your ``possible allergic reaction'' to minocycline was undoubtedly herx. The antibiotic was doing nothing less than exactly what it was supposed to do.
Oxygen: The bacteria live inside the cells and only low-dose antibiotics can reach the low concentrations that can penetrate and trickle inside the cell. High dose antibiotics will bind and prevent bacterial proteins from working but they will also bind some of the host proteins and disable them as well. Low-dose antibiotics ensure that only the bacterial proteins get targeted.
SForsgren: The vitamin D blood tests can suggest the level of infection in a patient but are not by any means required to show that a person will respond to the MP. The best way to know if you will respond to the MP is just to take the medications and see how you react.
***
For those of you who have already made up on your mind about the MP, I invite you to reconsider its merit. All these horror stories about the moderators banning negative posts are surely the exception, not the rule.
And, yes, the MP is hard, but isn't that the precisely the kind of treatment you would look for to rid yourself of an infection is that widespread and deeply entrenched?
Best, Amy
Posted by charlie (Member # 25) on :
quote:Originally posted by oxygenbabe: Why would low dose antibiotics kill these bacteria and high dose would not?
....maybe it's somehow analogous to homeopathy???
Charlie
Posted by polar blast (Member # 9142) on :
the marshall protocal kills more pathogens then any antibiotic..it is killing many differant pathogens at the same time..it is not the antibiotic that is doing the killing it is the Immune system..that is the difference..also the vitamin d docs at the same recepter site as steroids rendering the inate immune system useless...that is what the mp is about..and quite frankly is the only peer reviewed literature that seems to work thru sound science.the only problem with it is that it is hard to implement..but on the whole I think that it would work.. eric
Posted by luvs2ride (Member # 8090) on :
Dr. Thomas M Brown was a rheumatologist who determined mycoplasmas as well as lyme and strep could cause RA. He spent 50 yrs at Georgetown University treating RA with low dose antibiotics. He was after the mycoplasmas. He found the lower doses were more effective than the higher doses and he found pulsing every other day to be more effective than daily dosing.
It isn't the Marshall Protocol. But you may find some answers to your questions about the science behind low dosing.
Few people on that bulletin board claim to be cured, but many are in longterm remission and don't ever intend to stop their antibiotics. Taking it at such a low dose is safe for longterm use.
Luvs
Posted by billclo (Member # 12939) on :
Amyproal,
I never claimed to be on the MP, just that my doc is using some aspects of it. You should know by now that there is no one-size fits all treatment for Lymes, and that is what MP claims to be. My doc is a rheumatologist with plenty of clinical experience actually treating people, and has been seeing good results with his "taking from the MP what is useful" approach.
I can't say for 100% certaintity that I'm cured; with the pitiful state of testing available, no one can say yes or no.
I can say that I'm hugely improved; with no relapse so far. I'm grateful I got that far with the doc's help. Other than a leaky gut which is responding to therapy, I'm as near to 100% as I ever expect to get (99+% well).
Before I saw this doc, I was on high-dose Doxycycline interspaced with Tindamax, and felt about the same as on the alternative therapy. I got the massive body rashes which resembled vasculitis after 4 months on Doxy, stopped it, and had an immediate (1 day) recurrence of it when the new doc tried Minocycline. I only got the rash after 4 months of Doxy, well after I was feeling MUCH better. I never got the classic "herx" reaction; many folk never do you know.
quote: Bill: If you are taking vitamin D, what you are on cannot be called the MP. The treatment simply will not work. High dose vitamin D completely reverses the actions of Benicar. You probably feel good because you aren't killing any bacteria. At this stage of the game you should be feeling a strong herx. You may want to read this article about vitamin D http://bacteriality.com/2007/09/15/vitamind/
Your ``possible allergic reaction'' to minocycline was undoubtedly herx. The antibiotic was doing nothing less than exactly what it was supposed to do.
[ 25. September 2007, 07:04 PM: Message edited by: billclo ]
Posted by Robin123 (Member # 9197) on :
Luvs, the link doesn't work -- do you know another one?
Posted by treepatrol (Member # 4117) on :
quote:Originally posted by amyproal: Hello everyone,
My name is Amy Proal. I write for the science blog Bacteriality.com. I've had severe chronic fatigue sydrome (and probably Lyme disease since i was never tested but had all the symptoms) for the last four years. But I'm here to tell you about a medical treatment called the Marshall Protocol that is completely CURING the disease. I went from bedridden two years ago, and now am living a normal life - I'm working and even had the time to start my own blog about the treatment.
Hi Amy Iam very happy for you to be feeling better. The Marshall protochol has been around this site before look in my Newbie Links thread. Anyway sweety Iam happy for you but what is curing you is the abx's long term. And it is nice that you came here and offered TheCure but theres been plenty of people here that have tried it with {some} success but eventially they come back here and resume treatment and discuss lyme and coinfection.
And as far as DR Marshall hes not a DR of Medicene although he has a PHD its in a coplete other field.
Anyway I hope you continue to win your battle. It took seven months for my infection to come back after 1.5years of abx's so be aware. And at another time when I went off abx's it only took three days how I new was I got lyme induced encephilitis. So be aware of this when you stop abx's.
And welcome to lymenet!!!
Posted by CaliforniaLyme (Member # 7136) on :
GREAT site!@! Great folks!!!
Posted by oxygenbabe (Member # 5831) on :
Hi Amy. I'm sorry but there are people I know personally for whom it didn't work or who got worse (not herx worse) on it, including my former hyperbaric doctor, a Stanford/Harvard MD.
Barksplinter's wife (that's his moniker on lymenet) was bedridden 95% of the time and could not tolerate the marshall protocol but is slowly steadily improving on microdose IV rocephin.
You say "There are tons of people with lyme on the board who are happy with the MP." Can you find them and have them post on here? Tons is a big word. It sounds like an exaggeration.
In addition I know people who, doing abx and EXTRA Vitamin D, have gotten well from CFIDs/lyme, the exact opposite. And there is so much literature out now on the fact that Vitamin D prevents tuberculosis, mycoplasma and other infections. There is a direct correlation between lack of Vitamin D/latitudes where there is not enough sunlight, and cancer, multiple sclerosis etc. How does that square away with the Marshall protocol? Also think in evolutionary terms. We migrated out of Africa where there was tons of sun. We evolved to be in the sun. Those who thrive in low-sun environments like Scandinavia do so in part because they are so fair skinned they can utilize the sun they do get to make Vitamin D. Sanitoriums for TB--people sat out in the sun all day, and imo that allowed them to make enough Vitamin D to kill the bug.
5,000 people registered doesn't mean 5,000 active. I might even have registered years ago and still be counted as registered. And who quoted you the "200 medical professionals". Have you seen their registered names? Are they willing to come forth? Otherwise its unverifiable.
Your statement about the antibiotics is your explanation, even with your visual image of "trickle" but where is the science to back this up? Please show me the science. I wanted a reference, I wanted some peer-review science or a reputable scientist at a reputable university to indicate this is the case. You're stating an opinion: that low dose "trickles" and is therefore effective. It just doesn't sound like science to me.
It could also be that low-dose antibiotics inhibits but does not kill and when you go off you relapse. Who knows.
Again, for those who got well on this, congratulations and truly. But I've heard too many horror stories, including one person who almost died on it, to take it as a wholesale cure as its being promoted.
[ 25. September 2007, 12:34 PM: Message edited by: oxygenbabe ]
Posted by charlie (Member # 25) on :
....I also seem to remember Rosemary (rosesisland) from AR winding up in the ER with dangerously low BP a few years back from taking benicar which is supposed to be 'self-limiting'.
And the risk of colon cancer seems to be greater with those who avoid sunlight, not to mention the depression caused by living in a bat cave for years.
Also somebody let the cat out of the bag awhile back (I guess similar to giving away a secret handshake) that the mop up MP abx was bactrim at the very end.
Bactrim worked for me right off without the attendant asceticism.
my .02
Charlie
Posted by nellypointis (Member # 1719) on :
Must be this time of year!
All the old ..............s (don't try and count the dots:))are making a pushy comeback on Lymenet flash,
I guess, we'll soon be having someone on EL as well
Nelly
Posted by pennyhoule (Member # 5611) on :
There is so much misinformation here it's ridiculous, but frankly, I don't have the time to address every innaccuracy.
However, I will take the time to strongly admonish the person who automatically dismisses a bad reaction to minocycline as a "herx" because that is not only irresponsible, it's extremely dangerous.
If you do your homework you will find that a very serious side effect of minocycline is Pseudotumor Cerebri (intercranial hypertension) which can cause severe malaise, headaches, nausea, even blindness and death. There are some researchers who theorize that those of us who suffer from chronic infection and CFS (or ME) are already suffering from, or are predisposed to, low grade Intercranial Hypertension. If true, that means that we could be at a much greater risk for Minocycline induced Psuedotumor Cerebri than other people.
Mincoycline can also cause serious thyroid issues in some patients as well as drug induced Lupus. Minocycline is a powerful drug and not given the respect it should be given by the MP community, IMO.
I'd also strongly advise everyone to learn what a herx truly is, and realize that the word is being misused. This wouldn't matter so much if it weren't for people suffering through adverse symptoms because they think "herxing" is a good thing. They could simply be suffering because they're on the wrong meds and are actually making themselves sicker than they need to be.
The theoretical "herx", as it is so commonly being misused today, should NOT be a catch-all explanation for every negative reaction experienced. It's dangerous and stupid, and I'm sick of seeing it constantly used to explain away all negative effects. A herx should NEVER be considered a long term or ongoing process. A true herx is a rapid die-off of bacteria and shouldn't last more than a day or two. It's impossible on low dose abx to kill enough bacteria to cause a real herx. If anything, you could be activating the bacteria's defenses by teasing them with the small amount of abx, causing them to produce a bunch of toxins and multiplying more quickly, making you sicker, not healthier.
Regarding my personal experience with Benicar and the MP. I took large doses of Benicar for over 2 years. It reduced my inflammation tremendously but it did not "cure" me. I could not take minocycline because I developed a severe reaction to it as described above. I did take other antibiotics under the supervision of my doc. And I took them at FULL DOSES with no negative effects. Benicar did not "potentiate" the abx, and Benicar did NOT kill any bugs. The ABX I took killed the bugs. Sun & D avoidance did not help me, and the literature does not support the theory that it helps anyone other than Sarc patients. What Benicar DID do, after two years, was make my thigh muscles extremely weak, and my middle a lot thicker. I finally stopped taking it because I was worried about what was happening to my muscles, and how the low bp might be contributing to hypercoagulation factors in chronic infection. I now take other anti-inflammatories with my antimicrobials. I think both are vitally necessary to treat entrenched, chronic infections (hence our yahoo group, Infection And Inflammation). But I do not believe, after much research and personal experience with the MP, that it is a "cure" or that it is even scientifically supported in any meaningful way. The MP has elements that should be investigated, but that research needs to be done by someone who is objective regarding the pros and cons of the drugs involved.
Please be careful. Please do your homework. Don't take anyone's word as truth without researching it for yourself.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by charlie: ....I also seem to remember Rosemary (rosesisland) from AR winding up in the ER with dangerously low BP a few years back from taking benicar which is supposed to be 'self-limiting'.
You are correct!
Posted by CaliforniaLyme (Member # 7136) on :
Thank you Pennyhoule!!!
Posted by oxygenbabe (Member # 5831) on :
Thanks Penny. Cave...I think we were trying to help "newbies" as they say. Certain protocols have inherent serious risks. This includes salt/c and the Marshall protocol. This is where I get concerned, where people can severely injure themselves all the while being told the protocol is curative and the symptoms are all herxes.
It's paying it forward to try to help others with your own knowledge when you yourself have tried and failed a protocol. Unfortunately both lymestrategies (salt/c) and Marshall boards do not allow negative responses and responders to stay on the boards or question. They are banned. And sick people can't always research thoroughly for themselves. So we do them the favor by monitoring when these protocols are promoted, and trying to explain there are risks, so they take some caution.
Posted by jcb (Member # 8594) on :
The bacteriality.com website and the marshallprotocol.com website have loads of information that can benefit prople looking to understand chronic illness and the treatment of chronic illness. Take a look and you may find some interesting and useful thinking about all sorts of chronic illnesses that have frustrated the medical community and even the well meaning ILADS doctors. If you are at all interested as to how pathogens evade detection, how they can make you chronically sick, how the immune system is compromised by pathogens, why certain antibiotics help and certain antibiotics don't, how antibiotics work, why low dose and pulsed antibiotics work, how the immune function can be restored, you will find helpful information. The MP has adherants who have been sick long enough to have already tried and failed IV rocephin, high dose abx, penicillins and beta lactams, cipro, diflucan, colloidal silver, hyperbaric, rife, etc etc etc. If you wish to try these therapies first go right ahead and join the club, but in my experience the world of chronically ill patients is not full of people who got better that way, but in fact is quite the opposite(and by the way, where are the websites explaning how those therapies work and with patients reporting getting better?)
Posted by Health (Member # 6034) on :
I just heard that a man I know of is on it, and he says it is very effective at this point for him.
he had been on many year antibiotics by LLMD's and is now on the MP,
I think though that because he had been on orals for several years and IV for a few months, that maybe he is doing ok to be on it?
I am not sure, I just know that he said he had herxed much on it and was feeling very good.
I would say that others try it but be careful and monitor it. I would never have thought this man to be benifiting by it, BUT he is. He is on 2nd phase. He is working, had had lyme for 8 years before treating, something liek this.
Possibly high dose antibiotics, treating coinfections, IV if you can get it, AND the MP for some of us or many of us is may help
Maybe each program has benifit and what the MP does for some of us, regular anitbiotics does not.
Perhaps a trial of it for some of us that are not getting better with regular antibiotics may help?
Trish
Posted by Geneal (Member # 10375) on :
I am glad to see this subject posted.
I have a neighbor (CDC positive) who is investigating this protocol.
I decided to research it here on Lymenet for her.
She is already extremely deficient in Vitamin D.
I am glad this protocol is helping some people.
One thought keeps going through my mind.
Avoid all sun light for 3 years and take antibiotics....albeit "low dose".
Or......
Take antibiotics for 3 years and enjoy the sun.
I'll take the sun .
Thanks for all of the valuable info. I am printing this thread for my neighbor.
BTW, how does one work while on this protocol?
Hugs,
Geneal
Posted by nancyb (Member # 10154) on :
Don't forget about all the current research regarding the health benefits of Vitamin D.
Hey Geneal, how about abx, sunshine and lots of cancer fighting Vitamin D?!
Posted by Ann-OH (Member # 2020) on :
Prof. Marshall is currently a Director of the Autoimmunity Research Foundation, an Adjunct Professor of the School of Biological Sciences and Biotechnology, Murdoch University (Western Australia), and a past Chair of the Engineering in Medicine and Biology Society of the Ventura IEEE. He is the Patron of the Australian Autoimmunity Foundation.
Based in the heart of Southern California's "Digital Coast", Dr. Marshall is involved in technologies ranging from Immunology, Biomedicine, Autoimmunity, WiFi Security and Internet Infrastructure through RF, Hardware, Software, Audio/Video and Prepress. Previous speaking engagements have included COMDEX, Microprocessor Forums, WLAN/WiFi conferences, and International presentations in a variety of Medical Specialties.
Pasteur once said "In science, chance favors the prepared mind," and Dr. Marshall's career has certainly taken advantage of the many twisty passages in the fields of both Medical Science and Engineering. The best way to find out what he is doing right now is to look at the list of current presentations (above) or browse his recently published scientific papers.
Posted by CaliforniaLyme (Member # 7136) on :
Re the Autoimmunity Research Foundation, a member of our local group investigated the MP (and Trevor Marshall yelled at her on the phone!) and the Autoimmunity resarch Foundation is kind of his own thing- his wife is one of the board members- just fyi it is not an outside deal which selected him- it is his own foundation set up by him- according to her research- she posted that on our local Lyme list-
Posted by Lonestartick (Member # 2151) on :
I'm not sure whether or not who starts or runs a foundation has much to do with anything.
Even the LDF, the LDA, ILADs and Lymenet were once small organizations started by a few caring people whose lives were impacted by disease. I don't hear any of us criticizing them simply because those individuals all felt called to duty. Eventually their work caught on, but most faced opposition and detractors along the way.
Having lost my health many years ago, I have come to know some fascinating people who started health foundations as a result of their own illness and suffering. Some of the people who helped me and my mother find answers early on were: Ethel Snooks, Pat Ganger, Henry Scammel, Gail Nielson, and the Dudleys and the Vanderhoof-Forschners. All of them were just ordinary people who rose above difficult circumstances to start small foundations. Some of these small foundations went on to make a difference in the lives of so many others. Some even went on to host conferences and fund research.
Those very individuals who helped my mother and me are the same individuals who started: The Roadback Foundation, rheumatic.org, CRIF (Candida Research & Information Foundation), the Mycoplasma Registry, and the LDF.
Most of you here are familiar with the above organizations because many of them have since grown and caught on, so now they seem big and less personal. Nevertheless, they all started with very humble beginnings and one or two individuals who gave a darn.
The problem with the ARF is not the research they are doing or the fact that Trevor, his pharmacist wife, a RN-sarc patient, and another patient started it. The problem seems to me to be with how cliquish and controlling they are about their information and how they treat people. I object to the heavy censorship and the fact that private messages are not truly private.
That said, the ARF websites (Sarcinfo & MP) have grown and caught on extremely fast as a result of the growth and impact of the internet. I don't know how anyone might expect them to provide a lot of personal, individual handholding to all members who have since found them. Perhaps some of their problems are growth related, and maybe also related to the fact that the sickest, neediest, most brain-fogged patients tend to find them.
Nevertheless, many people I know have personally been helped by their work. Some continue to post at their website, despite the fact that it is such a controlled environment. However, I know numerous patients like myself and my husband who have been successful with the MP, but who prefer not to post in negative or controlled environments.
My best to all of you in your quest for health and healing.
Posted by oxygenbabe (Member # 5831) on :
The problem is promotion as a wholesale cure.
I went and read some of the testimonials, many gathered by Aussie Barb, but I'll assume she's sincere and has reported them correctly (ie not people posting themselves). They were impressive. Then again, a lot of folks on antibiotics have impressive responses. There are impressive responses for many therapies. The problem is that as Penny posted, there can be serious adverse side effects. The problem is that probably an equal number had no or negative effects. The problem is that it is not put forth as a protocol with benefits, possibly dramatic benefits, but also risks. Benicar is not tolerated by all, neither is minocycline, and some may have other problems like virii or fungi. For instance the Montoya study, 21 of 25 CFIDS patients had remarkable turnarounds on valcyte, a relatively new and strong antiviral. Some went from bedridden for years to active, working, exercising, back to a full life. How this will pan out in larger numbers is unknown but what's nice is he is doing a followup *study* and being held *accountable*. In addition the side effects of valcyte are well known and monitored. Marshall does not take this approach. Practically the opposite. So one ventures very gingerly into this arena in spite of the few with success, even remarkable success, even regaining excellent health, because there might be 20%, 50%, even 75% who didn't. It's impossible to know but personally the few I spoke with who tried the protocol did not improve. However that doesn't mean I disbelieve those I've heard of or read of who did improve.
Marshall does all of us a disservice by squelching *any* dissent or possibility of negative side effects.
Posted by charlie (Member # 25) on :
....I think we're all familiar with 'manipulated' studies no matter how gentle the massaging....
Posted by Robin123 (Member # 9197) on :
It's always better to tell the truth about what works and what doesn't and how often. Simple and clean. Should be built into the work -- ie, feedback and studies about outcomes. Maybe someone should tell Marshall this...
Posted by jcb (Member # 8594) on :
A dose of skepticism is good given the track record of new Lyme treatments and theories. But it is always amazing, on this site - where there are so many veterans of failed therapies to treat Lyme - how much suspicion is directed toward the MP. Just take a look for yourself at the basis for the protocol and leave the ad hominem and specious arguments aside for the time being.
Posted by treepatrol (Member # 4117) on :
He jumps down peoples throats when he thinks they are not on board with his line of thinking.
I was there yesterday and I cant rember who or thread but he basically told them end of discussion and from what I read it was a legit question.too bad
Posted by Elinor (Member # 8174) on :
Amy proal says.....
"I've had severe chronic fatigue sydrome (and probably Lyme disease since i was never tested but had all the symptoms) for the last four years."
How can you say you have found the cure for lyme disease when you don't even know if you have it? Lyme disease may have some similar symptoms but it is not CFS.
Posted by oxygenbabe (Member # 5831) on :
Notice how Amy promised to answer questions and then disappeared when she couldn't?
Posted by Cold Feet (Member # 9882) on :
Hey y'all, I won't jump into the fire here, but I will be happy to share my experiences with patients that want more information about the MP.
In 2 weeks, it will be one year on the MP. I was disabled before I started, and progressed at an incredible rate -- finding all kinds of weird infections throughout my body (joints, throat, etc.). I know I had Bb and mycoplasma pneumonia, but I am sure there was much more going on; hence, the MP was the more effective approach (at least for me).
The MP is not for woosies, and yes, there may be limitations in the MP site. I can't change that, but I am happy to help others. Email or call if I can help...
Good luck to all of us.
Posted by CaliforniaLyme (Member # 7136) on :
Cold feet, I am really, truly glad it has worked for you!!!!!! I WISH it was a cure for everyone! Truly, I do. Your post seems really sincere and I am glad you are offering to help others-
Posted by amyproal (Member # 13312) on :
Oxygenbabe,
I did not disapear because I can't answer your questions. i have an entire website about research related to the MP. If you read the pieces on the site you will find the answer to any questions that have been posed here.
I left this discussion because I have never been in a more negative place than this forum. Also because i don't feel that any of these speculation about the MP board are correct and I'm tired of hearing you guys say the same things over and over again when many of you haven't even tried the treatment yourselves.
I'm a very outspoken person and I was never censored on the MP site. Nor have i seen anybody else censored. The board staff try to maintain a certain level of decorum. It's not a chatroom and it's not a place where you can engage in free for all discussions. It's a place where you come to learn about the MP and how to get better.
I don't get you guys. This is about your health, not Dr. Marshall. If Satan was doing a treatment that seemed to be working (and NO I am not comparing Dr. Marshall to satan) I would do the treatment. Because the only person who is going to suffer from not getting better is me. You should try to put aside your feelings for people on the board and instead focus on the science.
Anyway, I find Dr. Marshall to be a really nice guy. It's not easy to run an internet site for patients that are sick and brainfogged and often very confused when they start the treatment. He's defnitely trying his best. He works around the clock day in and day out, without getting paid. I don't even know when he sleeps. He's a scientist, not a PR person. Give him a break if he came off to you as harsh.
Posted by oxygenbabe (Member # 5831) on :
No, the answers are not on your blog, Amy. I'm sure you're well intentioned but you state Marshall's theories as fact. You state that low dose antibiotics can "trickle" into the cell without binding cell proteins and therefore kill bacteria. I read your info on Vitamin D and it doesn't address my questions or the substantive literature showing it to be anti cancer and anti infective. You ignore, as Marshall does, poor results--you didn't respond to Penny Houle's warnings about minocycline, and she herself experienced a dangerous side effect. She says benicar worked as an anti inflammatory but began to have significant side effects after 2 years. Barksplinter's wife and others he knows had adverse effects and no improvement from the protocol. My former hyperbaric doc did badly on it. Benicar has adverse effects in some and one person in this thread recalls someone ending up in the ER as a result of a dangerous drop in blood pressure on it. The claims are excessive. Some are clearly responding and others are clearly not and there are dangers to the protocol. You address none of this. It isn't negativity--you consider it negativity if people disagree or point out the risks and dangers?
You say it's about our health. That's the point. Open discussion of potential gains and potential risks that may be substantial. Also, you haven't addressed my question about virii or fungi. What of the 21 out of 25 in Montoya's study who improved or got well on Valcyte? Marshall assumes intracellular bacteria as the global cause of autoimmune diseases, it seems to me.
Posted by dontlikeliver (Member # 4749) on :
As you have just arrived on this site, you are, I guess, not aware that quite a few people from this board did go on the MP. A minority were helped and it seems the majority were not and some got much worse or even suffered dangerous reactions. That does not make a board negative, but you are bringing "news" that we already know about and which has been discussed at length and tried and tested by many on here.
Posted by treepatrol (Member # 4117) on :
Amy we are not negative we just dont agree.
Posted by jarjar (Member # 8847) on :
I'm doing way better on the MP. I don't post often about it on this board due to all the negativity of the protocol on this board.
I agree its not for every single person. Just like all treatments there can be bad bad side effects for a few.
There are many people who say I tried the MP for 3 months or 6 months and it didn't work for me. Same goes for some lyme docs saying it doesn't work. You never know how long the patient tried it or how hard they tried to avoid sun and work the protocol.
It took me a year to start seeing major improvement because I was ill for so long.
Thanks for starting this post. It didn't surprise me at all when it was listed as one of the top 5 treatments for Lyme in Brian's new book.
So once again its not for everyone but there are many who are getting very good results with it and I'm glad to be on of them.
Posted by oxygenbabe (Member # 5831) on :
I'm glad you're one of them, too. But many and few are subjective words. It's more like, a few get better, even much better, and many don't. Meanwhile, Amy's post, her blog, do not list risks.
It really is unethical not to list *ALL* risks, and unethical and unwise and dangerously myopic to assume side effects even dangerous ones are herxes. This is done with the salt/c protocol too. People are harmed by this wholesale promotion as cure. A protocol that might benefit a few or some, and markedly benefit some, should nonetheless include upfront all risks and the acknowledgement that the 'science' is theoretical.
In contrast, when Rich V. proposed a 'methylation protocol' that was a shortened version of Dr Yasko's, and people had some adverse even dangerous effects (including one person ending up in the ER), he spent a week revising the protocol to include the risks and insist people work with their doctors. *THAT* is ethical.
Posted by amyproal (Member # 13312) on :
Oxygenbabe,
Please stop describing the science behind the MP as theoretical. Unless, you want to watch all the following videos and read all the following papers and discuss how you find the molecular modeling data to be "theoretical"
Marshall T: We have a lot to learn about 'diseases of the aging'. Correspondence to Giunta S: Is inflammaging an auto[innate]immunity subclinical syndrome? Immun Ageing. 2006 Dec 16;3(1):12. Available from URL http://www.immunityageing.com/content/3/1/12/comments
Marshall TG: VDR Nuclear Receptor Competence is the Key to Recovery from Chronic Inflammatory and Autoimmune Disease. Abstract presentation, Days of Molecular Medicine, Karolinska Institutet, Stockholm, May 2006. Copy available from URL http://autoimmunityresearch.org/karolinska-handout.pdf
Marshall TG: Molecular genomics offers new insight into the exact mechanism of action of common drugs - ARBs, Statins, and Corticosteroids. FDA CDER Visiting Professor presentation, FDA Biosciences Library, Accession QH447.M27 2006 Online Video available from URL http://autoimmunityresearch.org/fda-visiting-professor-7mar06.ram
Marshall TG, Lee RE, Marshall FE: Common angiotensin receptor blockers may directly modulate the immune system via VDR, PPAR and CCR2b. Theor Biol Med Model. 2006 Jan 10;3(1):1. Available from URL http://www.tbiomed.com/content/3/1/1
Waterhouse JC, Marshall TG, Fenter B, Mangin M, Blaney G: High levels of active 1,25-dihydroxyvitamin D despite low levels of the 25-hydroxyvitamin D precursor - Implications of dysregulated vitamin D for disgnosis and treatment of Chronic Disease. In Vitamin D: New Research. Volume 1. Edited by: Stoltz VD. New York: Nova Science Publishers; 2006. ISBN: 1-60021-000-7 Info from Publishers website
Marshall TG, Marshall FE: Sarcoidosis succumbs to antibiotics - implications for autoimmune disease. 4th International Conference on Autoimmunity, Budapest, Nov 2004 Marshall TG: Bacterial Th1 Processes Seem Key to Chronic Lyme Remission. ILADS Conference, Oct 2004, Rye Town, NY Marshall TG, Mangin M, Marshall FE: Bacterial Th1 Processes Key to CFS/ME Remission. AACFS Conference, Madison, WI, Oct 2004 Marshall TG, Fenter BJ, Marshall FE: Antibacterial Therapy Induces Remission in Sarcoidosis (in English). JOIMR 2005;3(1):2 Available from URL http://www.joimr.org/phorum/read.php?f=2&i=107&t=107
Marshall TG, Fenter B, Marshall FE: Antibacterial Therapy Induces Remission in Sarcoidosis. Herald MKDTS 2004g; Volume III: Release 1. (The Journal of the Interregional Clinical-Diagnostic Center, Kazan, Invited paper, Special issue on Sarcoidosis. Published in Russian translation). ISSN: 1726-6149 Available from URL http://www.icdc.ru/home.nsf/ae6ba61f2370d2c3c3256f4800499282/7c4adb204d59034bc3256f660035e4ce?OpenDocument
Marshall TG, Marshall FE: Sarcoidosis succumbs to antibiotics - implications for autoimmune disease. Autoimmunity Reviews,2004; 3(4):295-3001. Available from URL http://dx.doi.org/10.1016/j.autrev.2003.10.001 PMID: 15246025 or access FullText at author website
La th�rapie antibact�rienne induit une r�mission de la sarco�ode. R�seau Internationnal de Soutien des Malades de la Sarco�dose. Available from URL http://tinyurl.com/6al6g, Last Accessed April 2, 2005.
Marshall TG, Marshall FE: Sarcoidosis succumbs to antibiotics - implications for autoimmune disease. Autoimmunity Reviews,2004; Suppl 2:55 (Abstracts of 4th International Congress
You say these nothing about vitamin D and cancer on my website? Section 7 of my paper on Vitamin D is completely dedicated to vitamin D and cancer. Did you actually read the paper?
The MP site does carefully address risks associated with the protocol and how to dose antibiotics correctly in order to prevent them. Did you actually read through all the forums before making your staments?
JarJar, I'm glad you are feeling better!
Best,
Amy
Posted by oxygenbabe (Member # 5831) on :
Ummmm...you're citing a ton of articles by Marshall.
I don't know if it's kosher to quote another board, but here is part of Penny's post on her yahoo group back in 2007:
"Paula,
When I was trying to do the MP, the minocycline just about killed me and all I got was "herx, herx, herx"...and..."cut down on the mino, increase the Benicar". I was already on 160mg of benicar a day, and down to almost no mino, and it didn't help at all. It was a terrible reaction. Terrible headaches, vomiting, photosensitivity. That was an extremely scary experience and it was completely ignored by the "experts" at the MP board. I had no choice but to stop the mino and when I recovered enough to research it a bit I found out that pseudotumor cerebri (aka ICH) is a clearly listed side effect of mino and is much more common than people know. To promote that as "herx" is irresponsible and dangerous in my view.
When I stopped the mino out of necessity and switched abx at my doc's bidding, I became a bad guy rogue for not doing the protocol "correctly". When I expressed concern about others who were having severe reactions (one person died, remember?), all my posts were removed ..."
I've left out more inflammatory parts of the post.
Are you sure the risks are stated correctly?
This isn't worth discussing further. The risks and failures have been stated by others on this thread, as well as a few successes, more power to them.
Posted by Cold Feet (Member # 9882) on :
OK, I am ready to jump into the fire now with a few educated guesses. I am only making assumptions here, but I bet:
- The folks that ``tried'' the MP and ``suffered'' through some ``dangerous'' events had very high pathogenic loads; - Not managing the patients' physical, emotional and intellectual expectations led to their drop out; - Not many (or none) of these folks who tried the MP and dropped it ever recovered completely with any other remedy. Does any one know if ANY of them completely healed and moved on?
These are just my thoughts and observations by interviewing a handful of people during the last few years...
Posted by Lonestartick (Member # 2151) on :
It saddens me that I feel discouraged from sharing my experiences with the protocol that changed my life here. Thanks to the MP, I am enjoying health that I had actually lost the ability to imagine when I was at my worst. Thanks to the MP, I no longer take any pain meds, sleep meds, etc., and I can finally take my health for granted.
My favorite thing about the MP has been how affordable it is. The medications are more affordable than anything else I've ever done, especially since I have had to pay out of pocket for all of my treatments. I have never had to pay to participate at the MP website or to speak to Trevor & staff either.
I also like the fact that the MP is the only protocol I have ever been on where I do NOT show signs of relapsing when I stop. That is something I have never experienced before with any other treatment. It really has given me my life back.
Whether or not it looks good on paper and whether or not Marshall wrote the papers Amy cited doesn't matter to me, because I'm happy with my results. Furthermore, I know of two doctors who each have over 200 chronically ill patients succeeding with the MP and who rely on it in their practices.
That said... I always encourage those with recent or newly diagnosed Lyme infections to try the ILADS approach and to work closely with their doctors first.
Those who become chronic, continue to relapse, and for whom nothing else seems to work... please look at those patients who have recovered. You might learn from patients who were labeled treatment failures until they finally found the answers that were right for them.
The options that worked for them might work for you... but, if the MP doesn't sound like the right answer for you, don't do it. There are other options out there, but I wonder how often discussion of other options is discouraged here as well. (I don't know, because I'm no longer searching for answers.)
Lymenet is pretty good at helping new patients get diagnosed and find ILADS doctors. However, our ILADS doctors are under attack and not everyone will have access to them. I know of several ILADS doctors who have had to close their practices or were forced "by the powers that be" to take early retirement.
Even some of those who find ILADS doctors may not be helped by the ILADS approach. With that in mind, please remember that most recovered patients are NOT going to stick around in an overwhelmingly negative environment where they are made to feel unwelcome. Those who find health cease to need the forums.
Once they leave, the forums are filled with new patients looking for answers and lifers who have not achieved recovery; they can provide a lot of assistance to newbies, but they obviously don't have all the answers yet or they would be well. If they always discourage others from sharing, they may keep you from finding your own right answers.
Discouragement prevents others from being able to - or wanting to - share the options that have worked for them. That does not create an environment that is conducive to healing. For an environment conducive to healing, you might occasionally encourage those who have found answers to share the things that have worked for them - even when it's not something that interests you personally.
I don't blame Amy and others for not feeling comfortable enough to want to come back and share here. I am uncomfortable with the negative tone at Lymenet also. Sadly, I can't even remember the last time I felt comfortable or even welcome here.
------------------------------------ DX: Lyme (neuro-Borreliosis), Babesia, Bartonella, Mycoplasma, HHV-6, EBV, and Candida. All infections confirmed with lab testing. Diagnoses varied from CFS to FMS, Lupus and MS. Began treatment in 1998 with ABX. Followed by Roadback protocol. By 2000 disability forced me to move back home with parents. Began IV ABX 2000-2002 (17 months). Experienced initial successful transition to orals for treatment of Lyme & co-infections, health continued to go down hill with severe relapse.
By 2004, I was labeled a "treatment failure" until I found answers in the form of the MP. After initial difficulties adjusting to the MP followed by slow but steady progress, I am finally enjoying great health. I was light sensitive at first - normal now, including sun & light exposure (complete with tan lines).
* My opinions are my own and I am NOT affiliated with Trevor Marshall or the MP websites.* Posted by oxygenbabe (Member # 5831) on :
Why is it that adverse events must be ignored, cautions and questions be discarded, and it all cloaked under 1) folks who had high pathogen loads and dropped out from herxheimers (exactly the opposite of what Penny pointed out) or 2) negativity that means it shouldn't be discussed?
Why can't there be a protocol that works for an unknown number, perhaps a minority, perhaps a bit more, but so far not for the majority, and has made some sicker? Why are trips to the ER, psuedotumor cerebri and other effects being completely sidestepped by those who are getting well with the MP?
None of the good questions have been answered. The only answer is, "I'm not coming back here to post because it's too negative" or "This works, go look at the science etc"
Whatever.
Again, for lonestartick and amy getting well that's great. That does not translate into no risk, little risk, lack of side effects, or universal cure for lyme or anything approaching that.
Also, cave is right (with his unobstrcuted view of cave 75 he has acquired a lot of wisdom). If someone came on and said, I'm excited. This worked for me. There is a theory as to how it works though that hasn't been proven yet. It might work for you, who knows, check it out...There are risks associated with it and you definitely should work with your doctor.
That would be just fine.
Posted by jcb (Member # 8594) on :
The "MP" includes the use of Benicar - a very well known, widely used ARB. By any possible standard whatsoever it is a safe medication, (often used for hypertension.) It is still extraordinarily safe even at high dose, in fact for some quite pleasant at that dose. The antibiotics used are standard ones, used commonly for a wide variety of infections, including Lyme (and used by ILADS Dr's.) The length of the treatment is long - anyone on this site will find long term use of abx unremarkable (in fact, working hard to allow Dr's to prescribe long term abx for Lyme is the main focus of many in the Lyme community.) So, can we please keep these facts in mind when we see the (often repeated) comments of some of the persistent posters here about the various risks of the protocol. Enough already! If the risk they are really talking about is that you may "herx", well that certainly is a risk, well disclosed on the MP website, but it also happens to be an essential component of any therapy that actually fights Lyme - as opposed to simply suppressing the symptoms. Sort of analogous to saying that a risk of surgery is that you might have to have stitches. If it bothers some on this site that Marshall has come up with and researched various hypotheses as to why the protocol works, well then just ignore that part of his effort. You can be an agnostic and still use the protocol. Marshall is clearly intellectually curious about what causes chronic illness. Good for him. So are some of us who have seen first hand the failures of the medical profession to understand chronic Lyme. I wish my Dr. was as curious.
Posted by CaliforniaLyme (Member # 7136) on :
What Oxy said- said perfectly-!!
Posted by Cold Feet (Member # 9882) on :
Nice comments by all. It's nice to see that this topic has evolved in a constructive fashion.
I'll repeat my question from the previous topic, as it is still relevant yet unanswered:
...Not many (or none) of these folks who tried the MP and dropped it ever recovered completely with any other remedy. Does any one know if ANY of them completely healed and moved on? Posted by Lonestartick (Member # 2151) on :
Cave said, ``Oh, and perhaps the subject line gets people off on the wrong foot. The word "cure" is a bit strong and one-sided for this disease.''
That is what has always rubbed me the wrong way. I have always found that statement to be dismissive of people struggling with chronic illness and their difficulties getting diagnosed and finding treatment. No matter how well intentioned, it's premature for anyone to make those statements. It trivializes the experiences of so many here. (I hope that it will prove to be the case, but the jury won't be in on that for years (decades) to come.)
I also liked the way Oxygen so eloquently stated, ``If someone came on and said, I'm excited. This worked for me. There is a theory as to how it works though that hasn't been proven yet. It might work for you, who knows, check it out...There are risks associated with it and you definitely should work with your doctor.
That would be just fine.''
I hope that is how I have stated things, but if I haven't always done so, I will try to use your suggestions as a guideline.
Cold Feet said, ``...Not many (or none) of these folks who tried the MP and dropped it ever recovered completely with any other remedy. Does any one know if ANY of them completely healed and moved on?''
That's something I have wondered about. Does anyone know?
Well said by all. Posted by oxygenbabe (Member # 5831) on :
Lonestar, first of all, I'm really glad for you. I remember your Mom coming on here frequently, in fact, she was trying so hard, researching so much, so emphatic, and perhaps so much in warrior mode, I sometimes wondered if she was real and I believe I once questioned it and was backchanneled by Lou that indeed she was. I found it rare that a Mom would devote herself so exclusively and emphatically and indefatigably, with her burning torch raised, for her child, no matter what. And nothing was really working. I remember her posts about your cat or dog (can't remember which) helping you through the most horrible herxes on IV etc. And nothing was really working and you'd been harmed by this so young.
So to see you pull out with this protocol, with the help of your family, probably particularly your Mom, is really nice to hear. Congratulations to your Mom for being the rare person who not only cares, but who researched and would not give up, and you too for not giving up. Together you made it. And I see now you are married!
And your posts are mostly on this thread modest and letting us know how good you feel. The only problem I have is with saying the thread is negative. Honestly, some people have done so poorly on this protocol, some dangerously so, that it probably works really well for a subset of folks and how large that subset is I don't know but I suspect something like 15-20% of partial responders to other antibiotic protocols, and nobody yet knows why. There is a theory about VDR, Vitamin D, cell wall deficient bacteria, from Marshall but the problem is partly Marshall himself, as evidenced in some of the posts on this thread, and then, the fact is, it's only a theory.
I don't know about those who tried the Marshall protocol and moved on. I do know barksplinter's wife failed it miserably but is improving steadily on microdose rocephin. That's the only person I know of. I don't personally know anybody who tried the protocol, only through internet postings. Maybe some who failed that and antibiotics have something else, such as a virus or microfilarial worms or pathogenic fungi or some pathogen not yet understood.
[ 03. October 2007, 05:00 PM: Message edited by: oxygenbabe ]
Posted by dguy (Member # 8979) on :
The MP is helping me. As someone else mentioned, at its heart the MP is essentially the same as most lyme treatments advocated on this board: take abx long term and deal with the herxing.
It could be the MP works best for those who have very abnormal vitamin D levels, and not so well for others (I'm just speculating). Part of what convinced me to try the MP was that prior to learning of it, via my own exploration I had discovered vitamin D supplements influenced my symptoms. That led to a vit D blood test which returned numbers that were WAY off the norm. Like many lymies, years worth of tests for everything else imaginable kept turning out normal, normal, normal. Finally, with the vit D test I had found something abnormal on which to base a treatment!
What I dislike about the MP: 1) the light exposure restrictions, 2) their "sanitized" message board (though I can understand why they delete some messages). What I like about the MP: 1) I proceed at a pace that I choose by what I can tolerate, 2) I'm taking small doses of abx, which IMO, compared to high doses, have a smaller risk of side effects, and 3) after 10 years of debilitating illness, it's the first thing that's helping me. After about a year on abx, I've not yet experienced complete wellness/remission but the signs are very encouraging.
Posted by CaliforniaLyme (Member # 7136) on :
Yay*)!*)! Glad to hear it!!! This may very well be a great protocol for people who have problems dealing with Herxes!!!
Posted by amyproal (Member # 13312) on :
Hi California Lyme,
You definitely do have to deal with herx when on the MP. But as dbs says you can manage the herx by lowering your antibiotics as needed. However when people are very sick sometimes the herx is very strong at the start and cannot be so easily controlled. This doesn't happen in all cases, but when it does, the patient may have to deal with a little extra suffering while knowing that in time the symptoms will settle down. Also, it's a good feeling to know that the rise in symptoms is a result of your body finally recognizing and killing the bacteria that are making you sick.
I thought some of you guys might be interested in the Phase 1 Marshall Protocol guidelines. For those of you like Oxygenbabe who are concerned that the MP does not provide sufficient warnings you will see that there are indeed many warnings in the guidelines. They also give a good idea of what to expect in terms of herxheimer symptoms and how to manage them if they get too strong.
My gosh, your first paragraph is so beautifully descriptive and very touching. (If you aren't a writer, you should be.)
I've been extremely fortunate to have my mom's support. That she believed in me alone is a miracle. There were times when the rest of my family wanted nothing to do with me and they psychologized my illness, but my mom never gave up.
In the days before the internet, she spent countless hours at the medical library because she was never content merely to read the abstracts if she could locate the full article. I have been so very fortunate to have her and I credit her efforts for my success. I don't know that I could have done it without her. Even though there were times I felt very much alone, I had someone who believed and was searching for answers. Most patients don't have that and I don't know how they do it. They are the ones whose journeys and successes are the most inspiring.
Yes, I had a very cool cat that was diagnosed with Bartonella. As a result, he totally understood the health challenges. Like my mom, he never failed to be supportive. Since I married a fellow patient, we have the ultimate support network. We're both doing well, but we definitely put the fun back in dysfunctional during the first few years of marriage.
I went back and read some of the earlier threads on this topic. The negativity didn't get out of hand here, but I did sense some. Of course, I may be more sensitive to it now because of how heated and negative previous MP topics used to get - especially in the very early days where they turned into brawls. There were times when I really felt ganged up on and anything but supported or welcome to share. I see from the comments of others that I'm not the only one who has felt that way.
Part of the sense of negativity may result from how difficult it can be to interpret tone and context in posts, especially when you don't know the person on the other end. That's why it's so important to try to maintain an environment that permits people to share success while also permitting open discussion about the pros and cons of any protocol. There are cons with this one and it's difficult. For me others I know) it proved worth it because it worked wonders. For that I feel extremely fortunate and I think it has value. I also understand that it's not universally appealing or the right choice for everyone.
I do think Cold Feet's comments address what may be happening to some treatment failures. I've shared his observations, but I'm still curious about why it works for some and not others. I think it may be revealing that those who see the two most experienced MP doctors and have their support fair better than so many who have to rely only on the website. That's a topic that isn't encouraged at the MP website, at least not while I was there.
I didn't have time to follow up yesterday and I'm up past my bedtime tonight, so I'll pray this comes across OK in tone. (Sometimes my meaning gets lost when I'm sleepy.)
Posted by Lonestartick (Member # 2151) on :
Hi Amy,
It's past my bedtime and I probably shouldn't be trying to express any thoughts, but yikes, I don't recall actually feeling comforted by early Herxing and adjustment to the protocol. For me, it wasn't until my symptoms began to fall away that I felt like it was working. Even so, I was afraid to believe they wouldn't come back for the longest time.
Honestly, it wasn't until I contracted and came down with a really bad flu that hit everyone in our wedding party that I was really encouraged. Even though we were on our honeymoon, the fact that I ran my first high fever and threw it off in two days was what finally convinced me the MP was working. It had been a decade or more since I had been able to run a temperature when I suddenly reached 102. I couldn't believe it, so I kept sending my husband out to buy "another thermometer". I was sure we had come across a bad batch.
By the two year mark I was almost asymptomatic and now I'm really enjoying good health that I can take for granted, even when I'm exposed to kids who carry chronic strep. Those were all milestones for me, but the early Herxing - that only made me doubt the process more, especially since in some respects it was more tolerable than earlier Herxing on IVs and LLMD treatment.
All those changes left me wondering whether or not it was working and whether or not it would be real. So far, so good - great actually, but it took me a long time to decide that. Even though my experiences fit the model and followed the predictions, there were times when I really doubted. I'm thrilled now, but that wasn't always the case.
Take care and happy healing.
Posted by thankful (Member # 13425) on :
I have never posted or even registered before but felt I just had to in this topic.
Quoting Lonestartick below"
" but I'm still curious about why it works for some and not others. I think it may be revealing that those who see the two most experienced MP doctors and have their support fair better than so many who have to rely only on the website. "
You have hit the nail on the head for me anyway. The solid support and ability of my MP doctor, who is probably one of these, has been the sole reason I have persevered and am now reaping the benefits. I was not able to do many of the more restrictive parts of the MP as I had to continue work but still have been able to make steady progress and I'm confident I am going to continue to get even more healthy. I am getting my life and enthusiasm back. That's why I am...
Thankful.
Posted by amyproal (Member # 13312) on :
Thankful - I'm so glad you are improving!
Lonestar tick - I also met my boyfriend because of my illness. He was a year ahead of me on the MP when I started. I called him for guidance and we became good friends and well one thing led to another. He is also great support. He is doing so well right now. He just started an amazing full time job and is actually taking really long bike rides again (he used to be an excellent cyclist before he got sick).
Anyway, about being happy about herxing. I think it's a good way to approach the MP if possible. In my opinion when you start taking Benicar and the MP antibiotics and all of a sudden your symptoms start to flare, what other explanation can there be besides the fact that you are killing bacteria? The antibiotics are supposed to cause exactly that reaction because when they kill the bacteria, they relase toxins and cytokines (proteins that cause pain, inflammation and fatigue). A healthy person would take antibiotics and nothing would happen to them because they have no bacteria to kill. But if you are sick and you get the herx response, you think "hey! this must be because I'm killing bacteria wohooo! It's the idea of pain for gain.
I know that some of you think that feeling bad could be from the medications themselves but for the most part alergies to antibiotics are extremely rare and Benicar is a very safe drug with few side effects. So for the vast majority of people, feeling bad is a sign that they are moving towards recovery.
Take a look at the interviews with MP patients on my site. They all went through periods of just feeling herx before they got better. It's a natural part of the process.
I think one of the best ways to succeed on the MP is to contact other patients on the treatment and ask them for guidance. Read as many other people's progress reports as you can and see how they progress and manage symptoms. Also, read all the information on the board. There are many discussion topics that explain concepts that make it so much easier to understand how to do the treatment correctly.
Best,
Amy
Posted by oxygenbabe (Member # 5831) on :
Lonestar & Amy, nice posts.
You two have succeeded, and the successes tend to congregate. I've noticed that with other protocols. Those who have a hard time, who have to stop, who have side effects, can't tolerate, or who don't get better because other problems are the key, may slink away in shame, be banned, be told they didn't try long enough or hard enough etc. I am not saying this in a negative way, simply that it's hard to be objective. What if someone's main problem is, for instance, babesia? Low dose mino won't do much for that. I've read multiple interesting posts on people saying they really never turned a corner to wellness until they treated their babesia.
I have a hunch that's my main problem, but I haven't dared treat it as I find the protocols draconian even to contemplate. However, in my case, I got bit on the Connecticut shore in an area epidemic for babesia (where babesia is as prevalant or more so than lyme). I got the bullseye 12 days later, I treated immediately with doxyxycline which should have taken care of an early uncomplicated case of lyme, and yet I got sicker and sicker. And when I say got, I mean practically overnight. I sensed I had babesia too but couldn't get anyone to test me for a few years (positive). I had never been that sick in my life and it seemed a bug unlike any I could convey or relate to. It was completely bizarre, whatever infection was in my body, and I went from day to night. Sudden onset after tickbite. So, there are many complications.
Today I was on Amazon to buy a book someone mentioned about bioweapons, The Extremely Unfortunate Incident at Skull Valley. Amazon paired it with Bryan Rosner's Lyme disease self published book so I took a look at the reviews out of curiosity. Most were positive (and if he didn't include the salt/c protocol I'd probably be much more enthused) but one negative one had this to say about the Marshall Protocol (last May, 2007)--this reviewer identifies him or herself as a Georgia lyme patient and advocate with two lyme literate MD's:
"The next comment was about the claim that the Marshall protocol is somehow a wonderful treatment. Both thought that it was potentially very dangerous to induce a Vitamin D deficiency is a person. Very few credible Lyme docs still promote the Marshall protocol. In fact, Dr. Klinghardt (recognized expert) from the West Coast used to promote it and now says that his results have been very disappointing. Both my docs said that they would avoid it, and that the people who did manage to improve on it probably did so because of the use of low dose antibiotics."
We have to give some serious credence to the negative as well as the positive, without bias, which is so VERY hard in fact impossible without double blind studies. That's why those were invented. And even then there can be bias.
Questions I have that haven't been answered: There are more pathogens than just CWD deficient bacteria. In fact, for all we know, we ALL carry them and they are part of life. If you look at the work of Joshua Lederberg and Lynn Margulis you may indeed conclude this, since our precious mitochondria were once parasitic invaders and in a sense are the ultimate CWD. So, I have questions about the whole concept and whether it is a bit narrow. In addition, what if your main problem is fungi? I know people really sick from fungal infection and mold intolerance, and antibiotics only made them worse, not because of herxes, but because of fungal overgrowth, systemically. And what of those who turned the corner finally with babesia treatment? What of those who on valcyte the antiviral were able to get out of bed and back to work and life and exercise after years of being bedridden (Montoya)? What of those who failed the protocol and let's not assume they all simply couldn't tolerate herxes. Really try to figure out why. Maybe I will give my old hyperbaric doc a call as she is Stanford/Harvard educated, brilliant, and did the protocol and failed it miserably. I can ask for her insights and post.
Also--for herxes--I agree Amy as to why genuine herxes occur but they occur with all antibiotic treatment for lymies, and some lymies still stay chronic, so I sort of agree with Lonestar, its when symptoms fall away or your immune system gets a good acute short flu that you can feel more confident.
Posted by bpeck (Member # 3235) on :
Amy:
I remember your name- and you may or may not remember mine.
I, like Penny, and Lonestartick, were on the 'electronic' scene when the MP was in it's early days before it was formed and while it was being formed.
This was in the Sarcinfo days- the website Marshall had before he started his protocol.
All I can tell you is that I'm happy you're feeling well. There are alot of alternative therapies that have 'topped off' someone's therapy and pushed them in wellness.
That being said - The people who have been members on this board for many years remember the censorship, control, conversation twisting, and other un scientific tactics used against people who critized the protocol. Penny was sued for speaking her mind.
So - for the INFORMED people on this list - we won't be running up any banners touting the protocol you're pushing.
As Penny said.. there's alot of MIS-information out there and it's up to everyone to protect themselves by researching information relating to any protocol..
When ill, you can set yourself back a year or more by choosing the WRONG therapy.
So, I for one, am not excited about revisiting an unpleasant experience.
Barb
Posted by bpeck (Member # 3235) on :
Amy: One more post from me on this topic..
In my informed opinion about this protocol:
It's wrong to lead people who are uninformed to think this protocol will "CURE" Lyme.
There have been many physicians and researchers that have come and gone looking into this protocol and if it was the "CURE all" it claims to be it wouldn't have remained as obscure as it is- and the 'discussion' site is STILL censored against any UN sucessfull stories or any posts that question the protocol too intently..
Barb
AMY PROAL WROTE in part: I think one of the best ways to succeed on the MP is to contact other patients on the treatment and ask them for guidance. Read as many other people's progress reports as you can and see how they progress and manage symptoms. Also, read all the information on the board. There are many discussion topics that explain concepts that make it so much easier to understand how to do the treatment correctly.
Best,
Amy
Posted by amyproal (Member # 13312) on :
I'm glad this was brought up. I know there was an incident several years ago where a few people including Penny were banned from the MP site and apparently Penny was sued. Obviously I've heard that Dr. Marshall had very legitimate reasons for his actions but I don't even want to get into this situation because it's not relevant anymore. I started the treatment right after that situation and in my time on the treatment I've seen only one other person get banned. And she basically told the moderators to @$#* off several times. They gave her many chances to comply and she didn't.
So one person. You guys make it sound like every other person who starts the treatment runs the risk of getting banned or censored and that is just not true. Take, in contrast, the people like myself who think that the MP board is a very supportive and helpful community. Those people's voices are not being heard here.
You guys are worried about the safety of the MP, but don't you realize that's exactly why Dr. Marshall and the board moderators are so careful about what is posted on the board. The treatment must be done exactly as directed, or yes, problems can arise. If someone gets on the site and tries to tell people to do the treatment in a different way than than dictated their comments will get taken down. It's very important to the board that people do the treatment correctly and safely and some of these opinions are not based on valid science.
What's going on is that the people who were banned have all congregated in this forum. That is why this discussion is so ridiculously negative and why the view expressed about the treatment are so angry. There's a ton of personal grudges influencing these comments.
None of this has anything to do with new people who need to hear about the science behind the treatment and not the drama that took place several years ago. It's time to move on.
Best,
Amy
Posted by KelliCA (Member # 13453) on :
Amy wrote:
"There's a ton of personal grudges influencing these comments.
None of this has anything to do with new people who need to hear about the science behind the treatment and not the drama that took place several years ago. It's time to move on."
Amy, I know you're probably scared to read of any negative consequences resulting from the MP, since you're currently in the midst of trying the protocol.
But to completely negate other's legitimate experiences -- that in some cases nearly cost them their lives -- by saying that these are just 'personal grudges' is quite insulting, however unintentional.
And just because they took place several years ago doesn't make them any less relevant. I'm sure you wouldn't suggest that people just forget the Holocaust for similar reasons.
I personally know 3 people from our small support group who had to stop the MP due to severe kidney and/or hypotensive issues. One woman nearly lost her kidney function. And she was following the protocol to the "T". It took nearly 8 months to recover her kidney function.
I'm sure you feel you're doing the right thing and have obviously put a lot of work into your site. I would humbly suggest however, that you include more cautions and actually report some of these negative concerns and/or risks on your page, to protect yourself by telling the full story. Reading these 'negative' stories on this board may actually be a good thing, in the long run.
Perhaps you could ask others at the MP group if anyone has stopped taking the MP drugs. If they have, and they're still doing fantastic, then perhaps the word "cure" is appropriate for them.
But since you use the word "cure" in this thread, let me ask you directly -- can you name one person that has been cured by the MP protocol (i.e. off all drugs and still doing great)?
Best,
Kelli
Posted by amyproal (Member # 13312) on :
Kelly,
From the perspective of the MP, those patients you mention are not seen as treatment failures. We see the extreme increase in symptoms that they experienced when starting the treatment as an indication that they are killing a substantial level of L-form bacteria and consequently as a direct sign that the treatment WILL work for them.
If you have a high bacterial load and start Benicar all of a sudden the immune system can recognize all the pathogens present. Sometimes the herx is very strong at first. If a lady experienced kidney faliure that is a sign that her kidneys are severely infected with L-form bacteria. She can use special combinations of antibiotics and a modified phase 1 to slow the herx and prevent the kidney function from droping at such a fast rate.
Those people you speak of were unfortunately unable to realize that the treatment was working for them. Instead of quitting they should have sought out ways to better manage the herx.
Please read the following from the phase 1 guidelines about herx. This is supposed to happen!
"Anyone about to embark on the Marshall Protocol must understand that Herx reactions are unavoidable and will make them feel worse before they feel better. Patients should demonstrate a continued determination to recover their health, regardless of a little extra (temporary) suffering.
A Herx reaction may be an increase in current Th1 inflammation symptoms, a return of previous symptoms or emergence of subclinical symptoms. Usually these symptoms are merely unpleasant, but they can be temporarily debilitating or serious. The following is only a partial list of possible Herx symptoms: fatigue, muscle weakness, rash, headache, photosensitivity, pain anywhere, numbness, nausea, diarrhea, constipation, ringing in the ears, toothache, sinus congestion, nasal stuffiness, fever/chills, flu-like body ache, cough, irritability, depression, sleep disturbances and `brain-fog'.
Herx reactions are unique to each patient and their tissue involvement. When starting Benicar and Minocycline, it is not unusual to develop new, sometimes alarming, Herx symptoms. For example, patients may experience sharp muscle or organ pains, wheezing, shortness of breath, and cardiac rhythm disturbances even in the absence of previous identification of problems in these areas. Although rarely life-threatening, the Herx reaction needs to be treated with respect. Carefully following the guidelines for Benicar and Minocycline should avert any serious problems.
Managing the Severe Herx Reaction To some extent, the degree of systemic involvement suggested by D-metabolites levels, other inflammatory blood markers, imaging, severity of symptoms and length of illness will hint at the possibility of serious Herx reactions. But every patient should be alert to their possibility and understand how to manage them. Patients who have had a cardiac workup have the advantage of knowing of the possibility of heart disease can be prepared with a full spectrum of Herx management techniques and/or guided emergency instructions.
Patients with cardio-respiratory, liver, renal involvement or other serious health problems should be monitored very closely by their health care provider in order to properly manage Herx symptoms and hormonal rebalancing, until the Th1 inflammation has been resolved.
Intolerable Herx reactions can surprise a health care provider (or patient) who was previously unaware of Th1 inflammatory involvement. By provoking the Herx reaction, Benicar and Minocycline are performing a therapeutic probe, providing information about unsuspected systemic inflammation.
Intolerable Herx reactions may be difficult to predict because uncontrolled factors (e.g. an increase in body temperature) can cause a sudden improvement in tissue penetration with a resulting high bacterial kill and endotoxin release. Herx reactions can occur at any time and with each increase in a dose."
I would like to say that it's not this bad for everyone. The severity of your herx is directly related to how high your bacterial load is. There are many people who are able to work and do other activities while herxing. It varies widely from person to person. The herx can also be controlled by adjusting the dose of antibiotics.
Best,
Amy
Posted by amyproal (Member # 13312) on :
The MP medications are chosen for their effectiveness against pleomorphic, intra-cellular bacteria. Bacterial die-off always elicits an inflammatory cytokine release from the cells they have parasitized. The result is a temporary exacerbation of disease symptoms, a phenomenon called the Jarisch- Herxheimer reaction (Herx). Minocycline elicits the maximum Herx response as its tissue concentration decays away to zero. Herx reactions typically begin 1-24 hrs after the Minocycline dose and usually dissipate 12-24 hrs before the next antibiotic dose. Many patients find the reaction is strongest on the second day.
Anyone about to embark on the Marshall Protocol must understand that Herx reactions are unavoidable and will make them feel worse before they feel better. Patients should demonstrate a continued determination to recover their health, regardless of a little extra (temporary) suffering.
A Herx reaction may be an increase in current Th1 inflammation symptoms, a return of previous symptoms or emergence of subclinical symptoms. Usually these symptoms are merely unpleasant, but they can be temporarily debilitating or serious. The following is only a partial list of possible Herx symptoms: fatigue, muscle weakness, rash, headache, photosensitivity, pain anywhere, numbness, nausea, diarrhea, constipation, ringing in the ears, toothache, sinus congestion, nasal stuffiness, fever/chills, flu-like body ache, cough, irritability, depression, sleep disturbances and `brain-fog'.
Herx reactions are unique to each patient and their tissue involvement. When starting Benicar and Minocycline, it is not unusual to develop new, sometimes alarming, Herx symptoms. For example, patients may experience sharp muscle or organ pains, wheezing, shortness of breath, and cardiac rhythm disturbances even in the absence of previous identification of problems in these areas. Although rarely life-threatening, the Herx reaction needs to be treated with respect. Carefully following the guidelines for Benicar and Minocycline should avert any serious problems.
Posted by bpeck (Member # 3235) on :
Amy:
You see Amy- right out of the shoot you are parroting the same ole song we've heard for 5 years - baciscally since the inception of this protocol- And I was there while the song was being written.
Those of us who have tried various therapies- and relay our experiences and fears OPENLY here do NOT, I repeat DO NOT push or tout any particular protocol - on the contrary - information is freely given- pro and con- and people can choose what's best for themselves...
WHen you talk about 'patients' and totally misunderstand what the herxheimer reaction really is- gives away the fact you are a mouth piece for things you don't understand. You're doing yourself a big diservice doing anything other than sharing your experiences and observations.
Using the WEAK argument that it's a 'grudge' when people disagree- instead of researching the truth - shows you have no idea what you're talking about.
And IMO, history is ALWAYS relevant.
Barb
AMY P WROTE in PART Kelly,
From the perspective of the MP, those patients you mention are not seen as treatment failures. We see the extreme increase in symptoms that they experienced when starting the treatment as an indication that they are killing a substantial level of L-form bacteria and consequently as a direct sign that the treatment WILL work for them.
Posted by KelliCA (Member # 13453) on :
Thanks for your reply Amy. I'm disappointed however that you cannot see or understand yet how patronizing your statements are. I'm sure you don't mean them to be.
You said...
"From the perspective of the MP, those patients you mention are not seen as treatment failures."
Tell that to their kidney specialists who had to demand that they stop treatment for fear their patients kidneys would completely shut down and fail. As in 'stop working'. Kidney failure is one step away from DEATH -- it has nothing to do with a so-call "herx".
"We see the extreme increase in symptoms that they experienced when starting the treatment as an indication that they are killing a substantial level of L-form bacteria and consequently as a direct sign that the treatment WILL work for them."
First of all, the fact that you use the word "we" says Barb is correct -- you're just parroting the dogma from the MP Club. And secondly, these weren't an "extreme increase in symptoms" -- their kidneys were fine before treatment.
Amy -- it is truly in YOUR best interest that you consider -- just consider -- reading about the potential risks involved with the MP on other sites (perhaps by doing a google search?). Even Dr. Paul Cheney has expressed reservations about the MP, and to the best of my knowledge, no other leading CFS/Lyme doctor has endorsed it. Correct me if I'm wrong.
You won't find the real horror stories on the MP site. They were "lost" during a revamp of the site about 2-3 years ago, and like others have said, if one asks too many questions, or especially questions the protocol itself, Marshall rudely cuts them off and/or they are banned. So much for free speech.
Secondly, try to put yourself in these patient's positions. The ones I've read about and/or heard about directly, tried and tried and tried to stay on the protocol, telling their doctors and specialists what you have repeated here...that it's just a herx due to a high bacterial load...etc..
But they got worse and worse, and as I described earlier, came close to losing their life because they came so close to kidney failure. If that isn't "treatment failure", then with all due respect, I don't know what is.
And finally, I ask the question again: Has ANYONE gone off the drugs -- anyone, even Marshall or Rennie or whoever is left there -- so that they can say they were CURED by the MP?
Sincerely,
Kelli
p.s. Please note that the references you posted earlier...to my knowledge most of them were talks or presentations. Please correct me if I'm wrong, but it's my understanding that Marshall has tried to get published in prestigious medical journals, only to be turned down. A "PubMed" search will turn up nothing of his that has been accepted in any major journal. But I could be wrong on that and would appreciate a correction if I am... Posted by KelliCA (Member # 13453) on :
Thanks for your reply Amy. I'm disappointed however that you cannot see or understand yet how patronizing your statements are. I'm sure you don't mean them to be.
You said...
"From the perspective of the MP, those patients you mention are not seen as treatment failures."
Tell that to their kidney specialists who had to demand that they stop treatment for fear their patients kidneys would completely shut down and fail. As in 'stop working'. Kidney failure is one step away from DEATH -- it has nothing to do with a so-call "herx".
"We see the extreme increase in symptoms that they experienced when starting the treatment as an indication that they are killing a substantial level of L-form bacteria and consequently as a direct sign that the treatment WILL work for them."
First of all, the fact that you use the word "we" says Barb is correct -- you're just parroting the dogma from the MP Club. And secondly, these weren't an "extreme increase in symptoms" -- their kidneys were fine before treatment.
Amy -- it is truly in YOUR best interest that you consider -- just consider -- reading about the potential risks involved with the MP on other sites (perhaps by doing a google search?). Even Dr. Paul Cheney has expressed reservations about the MP, and to the best of my knowledge, no other leading CFS/Lyme doctor has endorsed it. Correct me if I'm wrong.
You won't find the real horror stories on the MP site. They were "lost" during a revamp of the site about 2-3 years ago, and like others have said, if one asks too many questions, or especially questions the protocol itself, Marshall rudely cuts them off and/or they are banned. So much for free speech.
Secondly, try to put yourself in these patient's positions. The ones I've read about and/or heard about directly, tried and tried and tried to stay on the protocol, telling their doctors and specialists what you have repeated here...that it's just a herx due to a high bacterial load...etc..
But they got worse and worse, and as I described earlier, came close to losing their life because they came so close to kidney failure. If that isn't "treatment failure", then with all due respect, I don't know what is.
And finally, I ask the question again: Has ANYONE gone off the drugs -- anyone, even Marshall or Rennie or whoever is left there -- so that they can say they were CURED by the MP?
Sincerely,
Kelli
p.s. Please note that the references you posted earlier...to my knowledge most of them were talks or presentations. Please correct me if I'm wrong, but it's my understanding that Marshall has tried to get published in prestigious medical journals, only to be turned down. A "PubMed" search will turn up nothing of his that has been accepted in any major journal. But I could be wrong on that and would appreciate a correction if I am... Posted by KelliCA (Member # 13453) on :
sorry...accidentally hit the post button twice...not sure how to delete the duplicate...? Posted by Robin123 (Member # 9197) on :
Can anyone try the Marshall protocol if they're allergic to antibiotics? That is, just try the benicar alone? I think I'm allergic to all abx except clindamycin, and that's not working right now. And would someone herx on benicar alone?
Posted by bpeck (Member # 3235) on :
KelliCA: Your post illustrates what I was referring to when I said they have *******ized the word HERX. The addage "no gain without pain" muddies the waters when trying to decide what's going on when a person goes downhill on treatment... also- you can delete your double post by clicking on the tiny piece of paper and pencil which is above your post (it's edit/delete).
And for the poster who is inquiring about trying the MP but is allergic to most abx:
If you subsitute other abx, and don't deprive yourself from vitD it really won't be the MP so it would be best to talk to your doc about what you want to try - since you are limited by what you can take.
Barb
Posted by oxygenbabe (Member # 5831) on :
Thank you Barb & Kelli. I feel a bit discouraged that I had to keep the questions & thread alive for 2 weeks before really good information came out. I'm going to bookmark this thread so I don't have to spend so much time & energy (and neither do others) in the future should the MP come round in another incarnation by another poster.
I would cut Amy slack except she refuses to even alter the thread header which many have asked her to do. I think she doesn't understand what good scientific research is and because she's feeling better has become what is essentially a convert, and a mouthpiece, who has been fed a certain view and a certain interpretation of existing science, along with a theory, which she believes. Where I think she could behave more responsibly is to begin to think for herself in response to the serious concerns/experiences posted, and certainly revise her thread header.
So the reality is: the MP works very well for a minority who can tolerate the benicar and the low dose antibiotics. Maybe they need the benicar, maybe they don't (ie maybe it's like roadback low dose) but they are able to regain a quality of life which is wonderful. They have to stay on the drugs, i.e. not even Marshall has gone off them. Even so, considering that if like lonestartick they are out and about and enjoying themselves, it's worth it. Meanwhile, another significant minority has dangerous even life threatening side effects that are unfortunately dismissed as herx. These people may take a long time to recover to previous pre-MP levels and probably go through a great deal of unecessary physical and mental anguish. And probably the middle of the bellcurve "fails" the protocol as my hyperbaric doctor did but isn't worse off except for a lot of lost time.
Posted by amyproal (Member # 13312) on :
Robin,
You can still do the MP if you have alergies to some of the antibiotics. Each MP antibiotic is chosen from a class of antibiotics. If you are alergic to one of the antibiotics in the group you can work with your doctor and usually substitute in others with similar characteristics. It would think it would unlikely that you would be alergic to all of them. Post your question on the MP site and the moderators will tell you more about how to approach this issue. I know there are people on the treatment who have problems with certain antbiotics and have been able to still do the treatment.
Posted by amyproal (Member # 13312) on :
You know, Barb, Oxygenbabe,
I am thinking for myself. I wrote an entire thesis about the MP before I even started the treatment. On my site you will see over 250 referenced scientific papers, only a handful of them Marshalls. All I do everyday is read scientific papers.
One thing I don't understand about your perspectives. What about very low dose antibiotics and Benicar could make a patient feel "worse and worse" besides the herxheimer reaction generated by the meds? I mean, Benicar has a great safety profile and is a simple angiotensis II recpeptor blocker drug which are used all the time in patients without issue. What do you think happened to these people who felt a rise in symptoms but you don't think were herxing. I'm not trying to be patronizing. I just want to get a better idea of your thinking.
Posted by amyproal (Member # 13312) on :
One more thing, the following Marshall papers turn up in PubMed. Also, I've never heard anything about a journal not publishing his paper. I know some of the other links that I gave you guys are presentations but if you watch them they are very, very interesting and give the molecular data that forms the backbone of the treatment. Those were the videos that really helped me bring together the different aspects of the MP.
Marshall TG. Related Articles, Links [Unable to display image] Are statins analogues of vitamin D? Lancet. 2006 Oct 7;368(9543):1234; author reply 1235. No abstract available. PMID: 17027719 [PubMed - indexed for MEDLINE] 2: Marshall TG, Lee RE, Marshall FE. Related Articles, Links [Unable to display image] Common angiotensin receptor blockers may directly modulate the immune system via VDR, PPAR and CCR2b. Theor Biol Med Model. 2006 Jan 10;3:1. PMID: 16403216 [PubMed - indexed for MEDLINE] 3: Marshall TG, Marshall FE. Related Articles, Links Sarcoidosis succumbs to antibiotics--implications for autoimmune disease. Autoimmun Rev. 2004 Jun;3(4):295-300. Review. PMID: 15246025 [PubMed - indexed for MEDLINE]
Posted by oxygenbabe (Member # 5831) on :
Amy, I don't mean to offend you, but on this entire thread you have appeared almost blithely heartless in regards to serious side effects. I am not saying you are so, but you certainly appear so. Penny had psuedotumor cerebri, you can die if those goes undiagnosed. Kelli is telling you about someone who almost went into kidney failure, which was apparently disregarded by those on the website, and her specialists demanded she stop or lose her kidney function. It apparently took her 8 months to recover. How do you feel about this? Also, I agree with Barb & others, this "we view this as" and the unconsidered view that *all is herx* takes a reasonable description of a known phenomenon (die-off) and uses it to mask known, demonstrated side effects.
First do no harm, Amy. But I don't think you will change your view.
May I ask why you came on here to promote the protocol anyway? Did you want more readers for your blog? I don't understand it. Trevor Marshall knows the topic has been around lymenet before. And Micul says he pulled the thread asking if anybody was off their drugs. How is an open-ended drug regimen a "cure". They don't say insulin cures diabetes, it does allow diabetics to live longer while they look for a cure.
"Safe" is relative. All drugs have side effects. If you have high blood pressure and could die of a stroke, benicar may be a wise choice. If you have lyme and normal blood pressure maybe not. Apparently some folks were so hypotensive they ended up in the E.R.
Where is your compassion and concern, so that you will adjust the title of your post and add some reservations, that the protocol is not for everyone and in fact on occasion can have disastrous results?
Well I'm not going to revisit this thread anymore. I've done my part and so have others. There really is no more to say. I hope you continue to feel well but I wish you would stop promoting the protocol here.
Posted by CaliforniaLyme (Member # 7136) on :
Amy said (!!):
I wrote an entire thesis about the MP before I even started the treatment.
Posted by joycejcwat101 (Member # 6848) on :
I wanted to refer people to two other threads where I have posted that address some of the questions about why I think some do better than others and the reasons to doubt a lot of the conclusions on the benefits of a lot of vitamin D supplementation.
I also want to note the answer to the previous question as to why we would spend time posting about the MP -- the answer is we want to help people. I have written a newsletter for 10 years with that aim. There is not any profit involved for any of us.
I do think one should study the MP thoroughly before starting. Some do feel better even near the beginning by the way, but it is true others may take many months to feel better. But I believe in many cases, they could go slower and do better, like I did.
the first part of my personal experiences on the MP are in Issue 9 at: http://members.aol.com/SynergyHN Posted by KelliCA (Member # 13453) on :
Sigh.
Well Amy, since you refuse to answer the big question, I guess that tells us what the answer is.
Anyway, if you haven't done it already, here's just one of many links to the possible risks involved with the MP. I have no idea when it was last updated...
Please note however (in fairness) that the author states: "This does not mean that vitamin D deficiency is the only cause of these diseases, or that you will not get them if you take vitamin D. What it does mean is that vitamin D, and the many ways in which it affects a person's health, can no longer be overlooked by the health care industry nor by individuals striving to achieve and maintain a greater state of health."
And he does advise against taking vitamin D if one has sarcoidosis.
And believe it or not, I'm glad you're both feeling better...I just personally wouldn't "risk it", pardon the pun, when there is so little objective oversight, so many horror stories, other optional treatments -- and again, the prospect of having to take the drugs forever.
k.
Posted by amyproal (Member # 13312) on :
I had no idea when i first posted that anyone from the MP had been here before. I thought I'd go to a few forums and tell people my story and about the MP. I put up links to the website because I think they help people understand some of the more complex parts of the MP.
Anyway, you definitely don't have to stay on the MP meds when you are feeling better. A lot of people stay on them because L-form bacteria are being increasingly implicated in aspects of the aging process and they are curious to see just how better they can get...maybe reach a state of health they didn't know was possible. That's why I said many of the recovered people say they feel "better than ever"
But you can just stop the abx when your symptoms of lyme go away and you'll be fine.
Best,
Amy
Posted by KelliCA (Member # 13453) on :
"But you can just stop the abx when your symptoms of lyme go away and you'll be fine."
Hi Amy,
Thanks for your reply.
You know people will be asking for names and references and/or proof of your statement!
Don't take it personally, because again I know you're well-intentioned, but I have never read anywhere on any site of any person going off the MP drugs and staying well.
It would be great if you could invite some of them here to share their stories...
I'd personally be curious to know who has been off the drugs the longest and stayed well.
Respectfully,
k.
Posted by gwenb (Member # 7217) on :
I think Marshall is confused about an elevated level of 1,25 (OH) 2D and what it means. It is my understanding that Marshall believes that 1,25 (OH) 2D is elevated because of dangerously high levels of Vitamin D when it appears, scientifically, that the exact opposite is true.
"as a person becomes vitamin D-deficient, there is an increase in the concentration of parathyroid hormone (PTH), which increases the renal production of 1,25(OH)2D, the circulating concentrations of which often become normal or even elevated."
I also believe when people are having serious kidney problems on the Marshall Protocol that they could be going into kidney failure because of severe Vitamin D deficiency.
Gwen
Posted by Lonestartick (Member # 2151) on :
Hi Oxygen - I haven't had the chance to follow up on this topic, because my young nieces have been visiting this weekend. They had a school holiday yesterday and an in-service day today. With 4 children underfoot, I haven't had the chance to check the forum.
I saved your response and I tried to reply when the computer/guest room was free and the children were occupied, but it's there hasn't been much time. I see that the topic has evolved some, though... so if you find my response is no longer appropriate or relevant - or if it doesn't make sense due to the many interruptions - I can remove it at your request tomorrow.
(I will say this; I do think it is important to discuss the evolution of the MP protocol, MP board and the heavy handed censorship at that site. I haven't had the chance to read all of the comments, but there were many who were treated very unfairly - no one more so than Penny, who unfairly bore the brunt of Trevor's wrath.)
Back to your original comments on pg 2... You're right about the successes congregating. I think that's true with failures, too, because in those cases it helps to find others who share your circumstances, understand them, and are also looking for further answers. At least that's been my experience based on my journey and my treatment failures along the way.
Success also tends to build on success, so I think Amy is right when she says that it can be important to find other patients who are doing the protocol that you are on and solicit their support. I'll add that I think that's extra helpful if they are a bit ahead of you.
At least that's been my experience. (There have been a few times when I've been able to hang on and continue with a given approach, because by own symptoms mirrored someone else's I knew and trusted. Because I knew they eventually enjoyed good results, I hoped by doing what they did, I would eventually experience improvement. For me that's been most helpful when they've been able to describe my symptoms exactly and then tell me the time frame in which their own resolved. Learning coping methods from them has helped as well.)
My heart breaks for those who felt unsupported and who felt forced to ``slink away in shame.'' I find it inexcusable when others are banned. Most of the ones I saw banned did not deserve such treatment. (It's hard for me to be objective about that, because I have strong feelings.) That site could do more to support patients, but the best support comes from doctors - second would be that from other individuals in the same situation.
On a more personal note, O2: If you haven't treated Babesia and you have a doctor who will help you, that seems to be very important. It's not always caught by testing, but having been around Lymenet and other Lyme forums for a long time, I've observed many patients not succeed until they treated Babesia. That seems to be a real turning point for many, so I would encourage you to consider that.
I say this because, I had lab confirmed Babesia. I did Mepron with Zithromax and it made a difference. In my case, I kept relapsing, even after adding plaquinel and artimisenin. My progress never held, but I think I probably reduced the load and it did help me. For others, it made all the difference and led to their success.
I do think that treating mine may have helped me to treat the Borrelia and other co-infections more easily. As a matter of fact, it was only after treating Babesia that my doctor considered Bartonella. When he finally ran the labs, it really lit up the test. Perhaps addressing Babesia allowed something else to show up. I had always had Bartonella symptoms, but I wasn't sure to trust them. That experience did fit in with V.S.'s paper on the ``carousel of infections'' and how various infections take their turns being dominant as one treats.
It was my Bartonella, relapsing Babesia and Borrelia that convinced me to try the MP, though - especially Bart, because neither Levaquin nor anything else had worked. Plus, I had strong personal feelings about not using medications that patients in the AIDS community were relying on.
I did have strong Babesia symptoms occur about a year into the MP. It almost caused me to drop out. My doctor felt very strongly that it was Babesia and I should stop the MP to treat it. Everything told me to quit the MP then, but instead we backed off to a level I could tolerate. It took about 6 weeks for me to notice, but that's when I really began to gain ground and my progress shot through the roof after that.
(However, I have had doctors tell me that similar SOB and Babesia symptoms can occur as a result of Herxing too heavily, so that may have been the case. Sadly, I don't have any way of really knowing, since that is about the only point where I haven't followed up with traditional lab work to confirm an infection for economic reasons. The Babesia-like symptoms did clear.)
For clarity, I do know that I was still lab-positive when I started the MP and it didn't show up the last time we tested, but I haven't retested lately. (It's hard to want to spend more money on lab panels, but I should probably consider doing it for the sake of others. As I transition off, I think that may be something I'll want to splurge on.)
You are correct that there are more pathogens than just the occult, CWDs, but since many of those are thought to be intracellular (ie. mycoplasma), I wonder whether or not they may be playing the role of the stealth viruses that the CFS researchers are seeking.
I am putting that out there, because according to Suholdolnik, viral infections and intracellular infections dysregulate the Rnase-L pathway. That pathway is more than capable of causing the deep fatigue, flue-like symptoms etc. When it runs amuck, low molecular weight Rnase-L is produced. It destroys both viral and host messenger RNA, which affects protein synthesis and leads to metabolic dysfunction. I've also heard it referred to as a ``big black hole for ATP''.
There are some researchers who suspect that this may be what first sets in motion a cascade of events that eventually interfere with the patient's ability to transfer and utilize oxygen: If that happens, they then become breeding grounds for facultative anaerobes such as Borrelia & Candida. Anyway, I wonder if that pathway might be affected by Valcyte. I know Rnase-L is affected by Ampligen.
You mentioned Candida... I do know of patients, including myself, who have had major struggles with fungal infections. I came from that background. So much so that I even met Billy Crook on a number of occasions, because he was friends with my mom. As much as I adore him and his work, in retrospect I think that was just another mis-diagnosis - or just another co-infection- along the way to identifying LD.
He was a tremendous support to me, but to be honest, I didn't really ever get a hold of my Candida problems until treating Lyme disease with antibiotics. Ironically, I had avoided antibiotics for over a decade because of Candida. I haven't had any problems with Candida at all on the MP.
Prior to my Lyme diagnosis and treatment, I did have some improvement with diet and some of the antifungals, but my overall health trend was in a downward direction. However, during my own pre-MP research, I stumbled across a journal article that indicated the antifungal I was most successful with affected 1,25 D. That finding left me rather curious and further convinced me the MP was worth trying.
I really wasn't convinced until my symptoms began to fall by the wayside. I had sort of experienced that before on high ABX protocols, especially antibiotics that attacked the cell wall, but any reduction in symptoms was only ever very short-lived and was lost immediately after stopping those drugs, sometimes even before.
For instance, I followed Art D's progress with high dose amoxicillin and enjoyed initial success, but my immune system never threw off other infections and exposures, even while on it. I was still on it when I relapsed hard. Of course, that was in the days when co-infections were not as widely accepted or addressed. (My experience has caused me to wonder how he faired after he dropped out of sight and became more private. Initial reports were good, but I've after that I never head anything more.)
Shortly after doing Amoxicillin, my Bowen Borrelia titer was the worst it's ever been. It changed dramatically for the better on the MP, but that test isn't offered anymore. (I found that intriguing, but I wasn't completely comfortable with that lab or their methods -but that's a completely different discussion. What does intrigue me is the fact that my immune system never really became fully functional until the MP. I noticed some improvement while I was avoiding light and D in the months I spent researching the MP, but my real improvement came only after I was on the full MP for 2 1/2 years. By that point I was enjoying great health and exposures to Strep, colds, and flu had ceased to bother me.
I was one of the patients who fit the model for the MP D dysregulation and addressing that seems to have made the real difference for me.
My husband had much more normal D levels, so I was concerned when he opted for it. It seemed to kick his immune system into over drive at first, uncomfortably so. In the end, though, it's really worked well for him too. I have heard that one doctor may use lower Benicar and individualize it for that subgroup of patients, but I've no longer kept up enough to know what the school of thought is on that.
On the other hand, my dad is in his 70's and works full time. He had some serious health problems, but he wasn't interested in stopping at his age to do the MP. He does not take any antibiotics, just D avoidance, but that seems to be working really well for him.
Posted by oxygenbabe (Member # 5831) on :
Lonestar, I appreciate such a long, considered, considerate, intelligent, caring, *and* insightful post. Some of your theories may indeed be right on the mark.
I'll offer a few thoughts of my own.
First, again, it's working for you and that's great. If your symptoms were mainly increased "herx" which you'd been through many times before, without any life threatening reactions, I can see why you would stay on it and I'm glad it paid off.
Second, thank you for your compassion for those who were ill-treated.
I agree about babesia. But my fungal situation is really rather unusual. It is systemic, and I have a very strong antibody/allergic response. I remember my candida antibodies being about 200 times normal years ago. And that doesn't take into account other fungi. When I first got *this* lyme tickbite (I think I got one at age 21 as well), and got so sick, I did do two, then four weeks of doxycycline. The fungal issues just got worse and worse. My ears and sinuses were totally stuffed, I couldn't do hyperbaric because I would get terrible vertigo from the ears being so stuffed, my bladder was burning, my digestion was shot to hell and I became extremely thin, I had diarrhea for months afterwards, *and*, I became so reactive to carbohydrates that even a spoonful of beans would stimulate so much fungal growth that I would be in tears from pain.
You might wonder if it is indeed fungal growth but I know my body pretty well. I also feel doxycycline was a lousy drug to treat the lyme. About 2 years ago I took about two weeks of amoxicillin for a tooth problem, I decided to double the dose to hit some lyme. So I took 3 grams a day, and my lyme symptoms started to clear up in just a few days. I had no herxheimer. My neck was much more mobile, as my whole body, and my buzzing stopped. So, I think my case of lyme is amoxicillin responsive (like Art D.) but I can't do what he did. I assume he's fine. Usually if you don't hear from folks they have put it behind them.
As to the babesia. I think it is a strange bug and it wasn't your immune system that failed to conquer it. If you read the literature, which I'm sure your Mom has, no current regimen cures it. The dog studies are particularly sobering. You can totally clear a dog's blood of it, seem to have completely cured it, pass that clean blood to uninfected dogs, and half will get babesia.
Thus much is not known about the bug. What species does it even fall into? How many strains are there? How pathogenic are they?
I do think it damages the endothelial lining of all the blood vessels, where it may live in part, and that IT may be responsible for things like lyme-associated vasculitis, which sometimes can be so severe. We say it's lyme but I wonder often if it's babesia.
I can only plan to treat it with herbs. I have to research cryptolepis.
However, I will say, I do think I've limited babesia's potential damage with my home chamber.
I'm assuming ketaconazole is the 1-25 drug you're speaking of.
Anyway, glad you're doing well. You strike such a nice middle balance it is a pleasure reading your posts.
Posted by CaliforniaLyme (Member # 7136) on :
Note to Oxy: I spoke to Art Doherty on the phone a while back, he is doing great, full remission, out enjoying life again!)!(*)! (Heck, another success story*)! Yes, that was high dose amoxi-
Posted by minoucat (Member # 5175) on :
Lonestar, I can't thank you enough for the most thoughtful, careful, and comprehensive response by an MP user that I've ever read.
I'm very grateful for the time you've taken to lay this out. When and if members of our LD group are interested in the MP, I finally feel that I have a solid discussion to refer them to.
Oxygenbabe, thank you too for asking the questions you ask, thanks for the way you ask them, and thanks for helping to turn this thread into a surprisingly helpful one.
I couldn't agree more with you about babesia. For some people, my hubby included, it seems to be the most pernicious, egregious bug of all. He's been free of babesia sx for 6 whole weeks after a brutal regimen -- if this lasts for 6 months I'll begin to feel truly hopeful.
Posted by oxygenbabe (Member # 5831) on :
Please let us know, minou, update us in a month or two?
There are several scientists with the capacity to do assays of hundreds or thousands of drugs on pathogens. They discover drugs that surprisingly inhibit the pathogen, that are not necessarily antibiotics etc. One recently did so for leishmaniasis. "However, researchers at Durham University have now developed a screening system to provide new insight into the biochemical processes at play. As a result they have identified and characterised a key enzyme which helps produce an essential cell component of protozoa called a `complex sphingolipid', plus an inhibitor which specifically acts against this enzyme. The team have recently filed a patent for the system, which could be used in the search for non-toxic anti-protozoan drugs."
I have info on another who was doing it for malaria and other bugs several years ago. Life challenges keep getting in the way of me trying to contact them and convince them to do it for tickborne illnesses. This would not be easy but not impossible. I would probably first have to assemble letters from researchers/doctors who are concerned. I wish I were independently wealthy, not only to do to the max all treatments that help me, but also, to work on things like this. There are probably drugs out there right now that are better treatments for some of these bugs.
Posted by joycejcwat101 (Member # 6848) on :
I have looked over some of the comments and will touch on a few points.
Gwen commented on the role of secondary hyperparathyroidism. I suggest, you see:
and see the last one third. The phenomenon of elevated 1,25D with low 25D has been shown to not be related to secondary hyperparathyroidism in the studies that looked into it specifically (in RA, sarcoidosis and inflammatory bowel disease). Of course, in individual cases, particularly when there is inadequate calcium intake, it can occur. Most of the studies looking at that condition do not first make sure the calcium intake is adequate.
If lowering vitamin D were causing kidney failure, we would all have it and most people's kidneys are functioning fine on the MP. A know of a case where a patient seemed to be having kidney failure and the doctor blamed it on Benicar. She had started moving too fast on the MP and her Herxing had gotten out of control. She was able, with the help of the MP board, to slow the Herxing and her kidneys recovered. Now, even her nephrologist realizes it was not the Benicar, though he doesn't understand the MP. She has found that she has had to go extremely slow, but she got through that bad spell and her kidneys are fine. In fact, she still is only on low dose mino. In her case, her immune response is more vigourous than others. So, it takes very little antibiotic to get all the Herxing her body can handle.
Also, someone mentioned a sensitivity to Benicar. I have found that very occasionally, that can be an issue. But fortunately, over several months, I was able to figure out that this issue could be resolved by identifying foods that contained substances that cross react with Benicar. I wrote an article about this at: http://members.aol.com/SynergyHN/CGA10-3a .
I think this sensitivity issue may be why some don't do well on the MP. I think if I had not reduced my food sensitivities greatly, I would not have been able to do the MP, or at least would have had much more difficulty.
Also, most people do not have to avoid sunlight all that much on the MP if they are careful about using sunscreens that contain zinc oxide and/or ketoconazole cream and wear a hat and the right kind of sunglasses. The ability of the micronized zinc oxide to protect people was not known a couple years ago. However, there is a small minority who do not find these precautions to be adequate and must avoid the sun much more carefully for at least a year or two-- sometimes more.
Joyce Waterhouse PS My own perspective is that I don't want anyone to try the MP based on what I say, but want them to study all their options and decide for themselves. I am just glad that I heard about the MP when I did, and I want to make sure others have that opportunity.
Posted by amyproal (Member # 13312) on :
Hi,
I'd just thought I'd inform you guys that my article about how the MP antibiotics work at the molecular level and how/why Benicar is needed is finally up on my site. It also goes into the reasons why pulsed, low-dose antibiotics are required. I provided links to the scientific papers I read in order to write the piece. You will see them cited throughout the piece and the actual studies listed at the end.
Immunosuppression is caused by 1,25(OH)2D, not 25(OH)D, as shown by countless studies in PUBMED. And your statement that 25(OH)D can displace 1,25(OH)2D and block the effects of 1,25(OH)2D, is an MP claim that has no support in the medical literature. From my reading, the MP claims are totally based on computer simulations, which are useless without actual studies (I've confirmed this by talking with Vitamin D experts who use such computer software themselves). It is true that 25(OH)D can dock to vitamin D receptors, but the affinity of 25(OH)D to the VDRs is somewhere between 500 and 1000 times less than 1,25(OH)2D, which is one of the reasons why under normal conditions in the human, 25(OH)D has not been shown to block the effects of 1,25(OH)2D.
Furthermore, there are no studies which show that high levels of 25(OH)D can leave you open to any chronic illnesses. Again, this is due to the fact that the immune effects from vitamin D are due to 1,25(OH)2D, not 25(OH)D, and the body regulates how much 25(OH)D is converted to 1,25(OH)2D. Immune production of 1,25(OH)2D is upregulated in response to inflammation, as a feedback reaction to prevent the inflammation from getting out of control. So yes, if you have way too much 1,25(OH)2D, that might oversuppress the immune system. But this only occurs in very specific conditions, such as sarcoidosis, where the increased 1,25(OH)2D is unable to control the inflammation. - Mark
And:
Jim said: "But as far as 25,D's affinity to the VDR being 1000 times less ... well guess what .. the concentration of 1.25D is in the 20-50 pg/ml whereas 25,D is in the 10-50 ng/ml levels (and that is serum levels -- not necessarily in tissue). So there is usually 1000 times more 25,D around."
Not really, because in the serum, vitamin D metabolites are bound to the DBP protein, and DBP binds to 25(OH)D with an affinity of about 10 times that of 1,25(OH)2D. Thus, serum 1,25(OH)2D is much more available than 25(OH)D is.
But perhaps more importantly, many of the tissues that contains VDRs, also contain the enzyme necessary to convert 25(OH)D to 1,25(OH)2D. Thus, tissues levels of 1,25(OH)2D and 25(OH)D are significantly different from serum levels. This is why lab tests show that analogues of 25(OH)D have the same ability to affect prostate cells as analogues of 1,25(OH)2D. The studies show that the prostate tissues convert the 25(OH)D analogue to 1,25(OH)2D.
Jim also said: "It turns out 1,25D has affinity for OTHER nuclear receptors as well -- like Thyroid (Alpha 2) and glucocorticoid and sex hormone receptors (theory is they all may have evolved from some ancient receptors), BUT the 1,25D does not activate those receptors -- thus can shut them down as well, throwing other hormones needed for the Adaptive immune system"
The above information though, is not based on studies, but is again based on an MP computer simulation. No study has actually shown any effects from 1,25(OH)2D on these other receptors. Indeed, even if such any effect was present, it's unlikely to be significant, because levels of 1,25(OH)2D are significantly lower than that of the other hormones. For example, free serum thyroid in the serum is 200 times greater than free 1,25(OH)2D.
Jim says: "I dunno about you but I will take mathematical modeling over any other lab method right now -- but then again -- I like numbers ;-)"
The same mathematical modeling by the MP also led them to claim that certain statin drugs could affect the vitamin D receptor, but an actual lab test showed no such effect.
I've spoken with a vitamin D researcher who uses such modelling programs, and who also does actual studies, and his response to me was "Like with any other docking model if there is no attempt to empirically test the model it is extremely theoretical." --Mark
Please also see Mark's cogent comments on *this* immunesupport thread:
He speaks there of a sarcoidosis patient (for whom the MP is probably generally most applicable) who went on MP, ignored his doc's advice to go back on steroids, and died.
Posted by hope0073 (Member # 11042) on :
I have known about the MP for about 4 years, if not longer.
I personally could not tolerate the Benicar--made my low aldosterone even lower and put me back in bed. I had gotten out of bed for about 2 hours a day thanks to low dose abx. I did light avoidance for about 18 mo. until I realized that it was doing nothing except making my already low quality of life even worse. The protocol did not work for me. It did not work for many I know.
I know several of the people who were originally on the MP board and have expressed their negative experiences, knowledge, and feelings in this thread and on other forums. I know many people from other forums who had a negative, even life-threatening exp. with the MP. I know many of the people who were kicked off or censored or sued by TM.
The MP is a very tough, controversial protocol. It apparently has helped some, although there are fewer success stories for Lymies. I personally don't know of anyone, except TM, who even after years on the protocol, are off the meds.
I am happy, happy for those that have toughed it out and have obviously benefitted. However, I must caution those considering it to do in-depth, painstaking research and be extremely cautious in trying it.
I will not respond to any queries. I rarely visit Lymenet. But I had heard of the current discussion on some other lists and felt I needed to share my personal experience and knowledge of it. FWIW.
Posted by barksplinter (Member # 13249) on :
My wife is one that thinks MP harmed her. She is a very bright health care professional who very closely followed the MP guidelines. SEVERAL of her friends tried it and NONE were helped.
Some feel that intense long herxing is harming tissues.... especially NEURO tissues... whether the protocol is Marshall's or some other.
As others have noted Picking your protocols is and extremely important duty for "Lyme" sufferers. Unfortunately many are too ill to do ALL the homework that is required. That is the beauty of sites like this. They help those with less ability to process information.
Posted by JRWagner (Member # 3229) on :
Good Grief...
Have we all forgotten the post of a lady who worked with the MP folks? She stated, without a doubt, that all dissent was squashed, and that the protocol did NOT work for Lyme. (Oxy, Cave, TuTu, etc...I agree 100%)
MP was started for Sarcoidosis...NOT LYME!!! Marshal has NOT been "Peer Reviewed" except by a Veternarian and some other non-MD's. My doctors, ILADS all, totally trashed this sometimes dangerous protocol. What is a NON-MD doing "prescribing" treatment in the first place?
Enough is enough. Marshall says he is the head of a Research Institute...(listed at his home address, and that he is affiliated with a Hospital...his WIFE, not an MD also, works there!
Enough "Smoke and Mirrors"...!!!
BE CAREFUL CHECK REFERENCES...INVESTIGATE!!!!
It is YOUR life, and only YOU can decide what to do...make the choice with FACTS...not hearsay evidence.
Still fighting...
Peace, Love and Welness, JRW
Posted by joycejcwat101 (Member # 6848) on :
I had decided to stop posting in this thread, as I have many other things I need to do, but before leaving, I felt I wanted to make a couple more points.
Something to ponder
I know patients on the MP who have had hard times because they had such heavy bacterial loads, that once their immune system got turned on and they reduced their vitamin D, they Herxed very heavily. Several of these people took breaks -- got off all MP meds and found their immune systems still kept Herxing. What typically happens is that at some time, sometimes in 1 -2 weeks and sometimes even taking as long as several months, the Herxing wanes and then over a period of time, they feel better and better. In several cases like this, they said they felt better than they had in many years.
At that point, in these cases I am thinking of, these people have chosen to come back on the MP to finish the process.
When I thought about these cases, it occurred to me a problem that might occur. If during that period of time that it takes for the Herx to wane, they had started some other treatment, then, when the Herxing from the MP finally declined, it would have been easy for them to attribute the improvement to the other treatment they had just begun -- not realizing they were at last reaping the benefit of their months of heavy Herxing on the MP.
The people I am referring to did not start any treatment to which they could attribute their sudden improvement and so realized it was the MP that was the only possible explanation. But I was thinking that might not happen in every case and the cause of improvement might not always be so certain -- some who had improved due to their time on the MP might never realize it.
I would also remind people, when serious reactions to the MP are discussed that serious reactions also occur on other treatments, particularly IV antibiotics, but also oral ones, and certainly a number of people have been hospitalized in relation to or while using other approaches. Because the MP is better at killing CWD bacteria in organs than any approach I know of, one must expect there is the possibility of serious Herx reactions and great care is taken because of this on cautioning people and helping them avoid problems. But left untreated, there will be serious consequences too, often the progression of heart disease and the gradual decline in function of infected organs.
People certainly may choose to wait and see until there is more data on the MP -- that is a reasonable choice. But there isn't a great deal of data on many other approaches, or on what happens when one isn't on an effective treatment. Clearly, the MP is not the only treatment that some people have problems with.
If Dr. Marshall is so totally wrong, as some think, then why are many people doing well on the MP? There is a good explanation based on his research and research of many others cited in my articles and Amy's that explains why some people do well, while some others have more difficulty with the MP due to high bacterial loads and heavy Herxing. But those who have the harshest criticism of the MP, often don't have a good explanation, IMO, why it does work well for many like myself or Lonestartick, who have tried dozens of approaches over 20 years of being ill.
BTW, I agree wholeheartedly with JRW's advise, do check references -- you will find lots of them at the links that Amy has provided and at the links I have included.
Hi Joyce. First, there are indeed adverse reactions on other protocols, but if the patient gets into the trouble, the doctor will usually take them off the drugs and stabilize them, and then patient and doctor will decide where to go from there.
Second "Because the MP is better at killing CWD bacteria in organs than any approach I know of, one must expect there is the possibility of serious Herx reactions and great care is taken because of this on cautioning people and helping them avoid problems."
I'm not sure what makes you say that. Haven't you read of all the failures posted on this thread alone, not just adverse events, but no help from the MP?
I wonder if, as Mark London has suggested, benicar functions as an anti inflammatory. News out on the statins yesterday and today suggests the same for them, including protecting lung function long term. Since MP had modelled statins at Vit D receptor and they weren't, it's just as likely benicar doesn't affect Vit D, which is why some folks with no Vit D problems like lonestartick's husband, do okay on the protocol. Combine an anti inflammatory drug with low dose antibiotics that keep bacteria in check, and if lucky enough to tolerate benicar, and if your particular bacterial load is vulnerable to mino & the other suggested abx, then you may feel better.
Posted by joycejcwat101 (Member # 6848) on :
Hi Oxygenbabe,
Of course, patients who have difficulty on the MP and their doctors can make the decision to continue or not, just like patients on IV antibiotics or any other treatment. Of course I have read about cases where people had too severe a level of Herxing and quit the MP and that they consider themselves to be "treatment failures." I think some may possibly be true treatment failures, but my experience indicates that most do not succeed because they went too fast for the very high bacterial load that they have (even though they may have been following the guidelines), or were not following it correctly. Also, it may be some have a sensitivity to Benicar. I go into some of this more below.
Actually, the interesting thing about Benicar is that it does both activate the VDR (vitamin D receptor) and have anti inflammatory effects, as you point out. The diversity of responses to Benicar appears to be usually related to the relative levels of these two effects.
The experience of patients is in line with the molecular modelling work showing the Benicar does bind receptors that affect inflammation (ppar gamma and others), in addition to the Vitamin D Receptor. See this article for more on the anti inflammatory effects and developments regarding the FDA and the MP, as well as data and case histories.
In my own case, I am in what appears to be the minority of patients for whom Benicar's activation of the VDR has a stronger effect than the anti inflammatory effect, so the net effect is increased symptoms with higher doses of Benicar. Perhaps this is somewhat more commonly the case in Lyme patients than in sarcoidosis patients, I don't know. For me, increasing Benicar acts identically on my Herxing as increasing the antibiotics.
However, the large majority of MP patients report the Benicar activates the VDR at lower doses, but when used at high doses, the palliative effect becomes stronger. Thus, Benicar dosage is frequently increased to help with very strong Herxing.
Some people on the protocol even find that Benicar is more palliative at one phase of the protocol than it is at another and others find it palliates some symptoms, but increases others. I think it probably depends on the particular bacterial species infecting the patient, the state of the immune system, the level of VDR blockage from 25D, and the level of VDR blockage from substances produced by bacteria.
You can read at Amy's site: www.bacteriality.com more about capnine, which is produced by a bacteria called Lysobacter, that molecular modelling shows is able to block the Vitamin D Receptor. Blocking the VDR seems to be such a good strategy for bacteria to use to cause chronic infection that other pathogens are sure to use it (see below re Klebsiella etc...-- my observations support this).
When the VDR is activated, the body produces more anti microbial peptides (the body's natural antibiotics) and the phagocytes function much better (they "gobble up" and "digest" the bacteria better). One thing that may explain why some have more trouble is that they don't have as much VDR blockage from various sources and they get too much bacterial killing all at once.
There are at least a few patients I know of who did not tolerate the full dose of Benicar and stopped the MP and then resumed on lower doses of Benicar and even smaller than usual doses of minocycline. That would be one way to handle it, but does not work well in all patients. Others who get too strong a Herx use a variety of methods described at the site (some are fairly new and were not available a year or two ago). I mention some possible ones in my own progress report as well:
One can read about my experiences in going extra slowly (though some need to go even slower than I did) at: http://members.aol.com/SynergyHN/MPjcw which also links to my MP progress report. I think if you read what I have written, you will see that there is no other explanation for my response to all the MP drugs and my current improvement than the one given in the above articles. Nothing in 20 years had improved my sleep or my food sensitvities as much as the MP, for instance -- as well as other symptoms. Few on this board have been as sick for as long as I have. I was bedridden and 30 pound underweight for a number of years.
I also feel that reducing food sensitivities can be of great help in general and in tolerating the MP. I think it not only helped me tolerate the Benicar (I used to have much lower blood pressure and light headed tendency before I lowered them), but I think some do not tolerate the Benicar very well due to it cross reacting with chlorogenic acid that occurs in quite a few foods (eg., coffee, tea, apples, pomegranate). And a similar substance that may cross react with Benicar appears to be produced by certain pathogenic bacteria that feed on starchy foods and sugar (and a few other things promote their growth as well). These bacteria include species like Klebsiella, Enterobacter and Proteus, among others. I think you might find this article I have written recently may be of interest: http://members.aol.com/SynergyHN/CGA10-3a .
As to your mention of vitamin D -- I had fairly low 25D levels (only 11) and high 1,25D (67), despite taking around 600-1000 IU daily and living in Southern California. Because my 25D was not very high, I think I may have had an easier time because I had not been suppressing my VDR quite as much over the years with the very high 25D some have.
But most of the time since I have been on the MP, my 25D has been even lower than that. I continue to improve. Last time I checked, my 25D was considered to be less than 4 ng/ml and my 1,25D was around 30 pg/ml (a pretty average level --actually slightly above average). I don't worry about having adequate VDR activation, not only because the active form, 1,25D is fine, but because I know the Benicar activates the VDR (both from molecular modeling and extensive experience of my others as well as myself -- see the CGA article above, re my own experience). However, complete activation will come later, when the bacteria are eliminated. Then, I won't need Benicar to help displace the bacteria-produced VDR blockers.
I also have written this article -- a briefer one, that captures the main points, though it isn't quite as up to date on some of the theory.
It is unfortunate that there is so much for patients who are struggling with brain fog to need to sort through. I do have a lot of sympathy for that state. Before I reduced my food sensitivities, I was too sick to even go on the computer at all. Some don't have as severe food sensitivities as mine, though in other cases, people are just unaware of them, because they are reacting to foods they eat every day (http://members.aol.com/SynergyHN/Testing10-4 ). After many years of dealing with these reactions, I wrote the aforementioned article and prior articles describe some short cut, free ways of detecting them that are not currently described in any book.
If you have tried one or two approaches that haven't worked, I still suggesting reading it, since most approaches in books and used by doctors would not have worked well enough for me either. I was able to further develop the approach discovered by an emininent immunologist back in the 1950s (Dr. Arthur Coca) and I share what I have learned on the site.
If you look at the SynergyHN site you will see that I have spent many years researching and writing about treatments that either helped me or that I felt were promising treatments that there was not much financial motive for anyone else to write about -- and thus I felt they were not as well known as they deserved to be.
You can see I don't have a history of trying to exploit patients or make money off them -- I always spend more than was ever received from subscribers. I just do my best to share what I have found out about. I was lucky enough to get a good education and have supportive family members and wanted to help others who were suffering like me. I remember all those years being bedridden, listening to books on tape all day, thinking some day I will get well and when I do, I will tell others what has helped me.
But everyone needs to study various approaches as best they can and make the decision for themselves. There may be some who need to try something else first that doesn't activate the immune system so much (eg. see www.roadback.org ). However, sometimes that approach doesn't work out well either and there are some on the MP who switched from that approach. I do feel that Herxing is typically necessary for killing bacteria, so I don't tend to trust approaches that do not cause any (except, something like finding and eliminating hidden food allergens).
Dr. Marshall feels there is strong evidence that many antibiotics when used at high doses in Lyme are immunosuppressive and palliative rather than getting at the CWD and biofilm bacteria (see the links in Amy's piece on antibiotics for references to support that position). Increasingly, antibiotics are being used to modulate (suppress) immune reactions in a variety of diseases (ALS is one example).
I had not planned to write such a long response, since all of this is covered in more detail in links that have been given, but decided that some might not look at the links, so went ahead. But I don't have the time to cover all possible questions in a lot more detail here, especially in the near future.
[ 13. October 2007, 03:36 PM: Message edited by: joycejcwat101 ]
Posted by oxygenbabe (Member # 5831) on :
Joyce, I'm sure you're sincere... Modelling is just that, modelling. Look at string theory...lots of modelling, going nowhere.
You make the a priori assumption that the MP is so good at activating the immune system and killing off lots of bacteria.
I'm sorry but...maybe others will want to educate themselves in detail about the MP but I'm not personally interested in it, and basically responded so that the full picture would come out, which it did, which is good, so others don't have to research endlessly and can take proper precautions. So I am not going to go and read the various URL's you gave but maybe others will.
I'm glad you're feeling better anyway and sorry you were bedridden so long.
And by the way, let me point out one other glaring contradiction...somewhere in your posts you said 60% of healthy controls have CWD bacteria. Not sure where you got this figure from and what the "N" was...(could be because I didn't go click on a URL) but that should indicate that the theory is suspect. If more than half of healthy people have CWD maybe it is simply a part of life (I mentioned Lederberg and Margulis), and has always been that way.
Okay...off to sleep...
Posted by sizzled (Member # 1357) on :
I tried it for 9 months AFTER abx tx. More as a 'mop up' therapy.
I had severe dizziness and started falling. Even broke my wrist.
My questions were not directly answered and it was inferred that I was non-compliant!!!
BLGH! Posted by KelliCA (Member # 13453) on :
Haven't stopped by in awhile. Looks like Amy has moved on...never answered my question(s), esp the main one. Not suprised.
Just amazed however that some continue to overuse the word HERX. Oh well.
"And by the way, let me point out one other glaring contradiction...somewhere in your posts you said 60% of healthy controls have CWD bacteria. "
EXCELLENT POINT Oxygenbabe! To me this suggests that working on the immune imbalance and/or strenthening the body by working on food allergies or intolerances, or nutritional deficiencies that cause the immune system to function improperly (something a vitamin D deficiency can do) is perhaps a direction some people may want to pursue.
A woman in our local support group discovered (at age 61!) that she had lyme -- she was diagnosed at the Fibro & Fatigue center. But rather than go the antibiotic route, she decided to speak with a naturopath, who helped diagnose that she had many food intolerances, including and/or especially wheat (gluten).
She went on a food rotation diet,,,and within about six months, she was skiing and in the summer was hiking in the mountains. And all this with no huge crashes the next day.
That was a year and a half ago and she continues to improve...her main issue is some residual brain fog problems, but overall, she is much improved, (esp for 63!) and hasn't even started ANY sort of anti-lyme protocol.
I asked early on if anyone had stopped the MP drugs and has remained in good health...someone posted that Marshall has. Hmmm...one person...and curiously, the guy who created the protocol. But in fairness, does anyone have a link to that information?
Kelli
Posted by oxygenbabe (Member # 5831) on :
Thanks for that *inspiring* story Kelli.
I am a fan of CaliLyme's but sometimes she scares me when she posts that she has virtually never seen anybody go into remission except on heavy abx regimens.
So it was nice to read that today.
Posted by KelliCA (Member # 13453) on :
You're welcome. This woman I speak about is a true inspiration to our group, and no pushover. Always very skeptical of most protocols, that's why even she is amazed she's doing so well.
"I am a fan of CaliLyme's but sometimes she scares me when she posts that she has virtually never seen anybody go into remission except on heavy abx regimens."
With all due respect to "CaliLyme", I must agree -- that IS scary. Antibiotics kill off bad and good (Defensive) bacteria...which are basically an important part of our immune system.
Some may find this heresy, but in my opinion, antibiotics were well intentioned back in the 40's and 50's, but when one looks at the big picture, what they have really done is helped create antibiotic-resistance bacteria, parasites, and other bugs.
This is the major difference between western, allopathic medicine, naturopathy, and especially eastern or Traditional Chinese Medicine (TCM).
For example, here's a good quote on the benefits/differences of TCM:
"TCM holds that herbal antibiotic ingredients could help in eradicating infectious pathogens. But the final eradication is not simply done by antibiotic herbal remedies; instead, it adopts a balanced approach through eliminating the pathogens and at the same time strengthening the body's inborn resistance (immunity).
Following this principle, Chinese medicine has developed therapies to regulate the immune system. TCM is a constitutional medicine and believes that the body itself is the major healing force.
Drugs and procedures can help to heal, but they cannot replace the healing function of the body. If the aim is to restore the health and well being of the patient, simply killing the infectious agents is insufficient. While eliminating the pathogen, the medical treatment must also restore the inner balance of the patients."
Posted by Rita_A (Member # 13550) on :
quote:Looks like Amy has moved on...never answered my question(s), esp the main one. Not suprised.
The only thing that is not surprising is that Amy stuck around as long as she did. You guys heap abuse on her. You don't read the links provided for you. You are unnecessarily argumentative. And then you complain when a legitimate question such as Kelli's most recent one goes unanswered.
The MP is like string theory? Please. String theory makes no predictions. Marshall's molecular modeling predicts that due to Benicar's affinity for the Vitamin D Receptor, Benicar will modify the immune system among any number of other predictions IF you R-E-A-D the MP site.
Poor Joyce Waterhouse, PhD. She writes a long piece explaining some of the finer points of the MP and this is what we read in response:
quote:You make the a priori assumption that the MP is so good at activating the immune system and killing off lots of bacteria.
A priori is one of those "smart person phrases" that not everyone gets, so let me use it in a sentence-- "I won't read any of the suggested links, because I have a priori assumed the MP doesn't work."
As a Lymie who is just starting on the MP, I get angry and have as much clouded thinking as any of you, but the kind of bile I see in this thread is a little overboard.
I can't imagine that what I have said here has added anything to this "discussion." I just hope some of you feel better now that you have articulated for yourselves and each other why the treatment that holds a great deal of promise is, in fact, worthy of your disdain.
Rita
Posted by oxygenbabe (Member # 5831) on :
Oi vey! At least I didn't go into erudite allusions to Bayesian inference. I just write what I think. I have suggested all along that a small number of folks do quite well on the protocol, and probably not for the reasons MP "models". They seem to stay on the meds. Others have posted their failures. These posts seem to outweigh the successes. A few had dangerous side effects.
Posted by treepatrol (Member # 4117) on :
quote:Originally posted by oxygenbabe: Oi vey! At least I didn't go into erudite allusions to Bayesian inference.
So your saying if you cant dazzel them with brilliance baffle them with bulls*it hahahha I couldnt resist. Posted by oxygenbabe (Member # 5831) on :
I say, when they say thou dost go too far, disdainful wench, bonk yourself on the head! Don't try to talk about Bayesian inference. Which they ain't usin'. Cuz you update your priors when new evidence comes in!
Adios. Time to clean the Posted by Lonestartick (Member # 2151) on :
You compared the MP modeling to modeling string theory, which you state is going nowhere. Brian Greene and Ed Witten among others would probably differ. Some of them might even feel that such opinions are reflective of what happens while trying to break complex science down for journalists and the general public who lack the background to understand it.)
Anyway, it's neither valid nor fair to compare modeling in cosmology to molecular modeling in chemistry or pharmacological applications. There is no comparison. String theory and its evolution into M-theory can't be verified experimentally because we lack the ability to measure things that are on the Planck scale.
Molecular modeling results are more predictive and they may be verified experimentally. I understand the limitations of modeling, so I certainly hope that will prove to be the case with Trevor's work. Nevertheless, I value the implications of his model based upon the way they tie in with my own experiences with years of having supplemented D only to become sicker. It is the difference in the level of healing I have attained on the MP that makes me think there really may be something more to his ideas.
Like others, I had vertigo and endured my share of syncope during my initial adjustment - though certainly no more so than while I was on IVs and other difficult treatment - or even with the progression of my illness. My progress took off once I finally made the adjustment. At this juncture, I am asymptomatic and my health is no longer a limiting factor in my life. That has never ever before been the case for me.
My husband had kidney inflammation as a result of his Lyme and was pulled off the ILADs high dose ABX for that reason. We watched his kidney function closely on the MP. It worsened initially, but he backed off and proceeded with caution. As a result, it eventually resolved for the first time since I've known him. (Granted, we would have stopped if his doctor had not felt comfortable continuing, but his doctor had already successfully treated a Sarc patient and told us that it was something we would monitor closely, but should resolve based on the other patient's experience.)
I have been off the MP for a month or more at a time without showing any signs of relapse, but I have had my nieces all summer and one has chronic bronchial infections and frequent strep throat. There are boundaries which prevent me from seeking treatment for her, so I opted to remain on the last clean-up phase slightly longer to allow for the frequent/constant exposures, even though my body now runs a fever and manages exposures. (Something it never did before, even on high dose ABX or pulsed ABX.)
Millie Coker-Vann Ph.D. (Thomas McPherson Brown's lab director) was the one who first told my mom that she expected the MP to be a 5-year process based on her own experience with the Roadback patients. Because the MP was so new, and because she had experience with a similar disease model, hers was the timeline I felt most confident with. I wouldn't think that timeline would be such a shock anyone who has been around chronic patients in the Lyme and Roadback forums for any length of time.
Those who have truly lost decades to illness the way that I have... Well, I would imagine they might understand why, even though I feel I'm more than ready to transition off, I want to permit myself enough time to be thorough - especially given additional family responsibilities and exposures right now. I do know of one Lyme patient who completed the protocol over a year ago and has not relapsed. He used to be active at Lymenet, but I think he has since moved on. I don't know if he is still active at the MP site anymore, because I'm no longer active there. My suspicions are that he has moved on with his life, since that's what he was doing the last time I heard from him.
I was really glad to see this discussion evolve with all sides present; although it's certainly deteriorating quickly now. I had hoped it would remain a respectful discussion where people could share their frustrations as well as feeling able to share their positive results.
Having suffered for so many years at great personal and economic expense, I had always hoped and prayed my own journey might eventually mean something to someone else. To feel that I have found something that may mean everything to someone else like me, and then to see comments that would disuade me from even looking at it thoroughly now... Well, it's very disappointing.
Were I learning about the MP for the first time now, I would probably feel inclined to dismiss the very protocol that has meant so much to me on a personal level. For some of us - me, my husband, Joyce, Jar Jar, Cold Feet, Dguy, Amy, the twins, & others - it is helping us.
For my family, it has been the answer to our long unanswered prayers. I worry that patients similar to me might come along and think that people smarter than themselves have deemed it unworthy, so they won't investigate it further. Had that happened to me, I simply can't imagine where I would be now.
There have been too many times in my life when it has been a struggle to keep fighting the good fight and not give up. I lost access to my LLMD shortly after I started this, so it was a real struggle to keep going at first. Now I don't even see an LLMD, and I no longer worry about not having access to a doctor. For the first time ever in my life, I feel that I have attained a level of healing where, if the plug was pulled on my treatment tomorrow, I don't think I would have to worry about relapse the way I once did.) That is an indescribable feeling after my long and painful journey.
I am finally really enjoying a level of health that I had lost the ability to imagine when I was sick. I don't think this is a protocol that one should dismiss so easily because of the egotistical tyrant who runs the website. Investigate it, weigh the pros, cons, benefits, and risks. If you embark on it, understand it's not easy, so proceed with caution and go slow. If you don't wish to investigate it further, urging others to do so with caution is great, but dismissing it altogether may prevent someone else from researching it further when it might be the right answer for them.
I really liked the way this topic had been evolving because it was doing a great job of examining the MP thoroughly. From the looks of things now, it's turning out to be another one of those, ``now that you know the scoop, don't investigate it any further topics.'' I am under a major time constraint for another project and am answering this while I eat, so, if you want to run the topic into the ground with snippy comments, go right ahead... have fun. For those who are interested, feel free to e-mail me at: [email protected]I'm pretty busy and I'm traveling a lot this month, but I will answer as time permits.
Sarah - thanks for sharing Art's triumphant story. It warms my heart because he was a one of a kind individual. He was so passionate about keeping his links up to date. I can only imagine the countless hours he spent turning his site into one of the most valuable Lyme resources of all time. You are so charming, I'll bet you might be able to sweet talk him into sharing a success story here if Melanie's Success Stories topic is still around. Just a thought...
Kelli - I think it would great if you or your friend added her success story to the topic as well. (If the topic is no longer in existence, I apologize.) Thank you for sharing it. Those who can't handle the high dose ABX this site focuses on need to know there are options. Please keep sharing.
O2 - thanks for keeping the topic alive and asking some great questions. ( I do know others who have had severe mold & fungal problems which prohibits them from doing any antibiotics. Some are so exquisitely sensitive it's hard for them to do anything at all.)
Joyce & Amy, thank you both for your valuable resources.
Thanks to all who made me feel welcome to discuss my experience for the first time since I started the MP. It means a lot. Lymenet was my home when I was looking for answers, so it was nice to feel welcome back for a change. Posted by lisag (Member # 6798) on :
lonestartick:
great post. you are one smart lady. i am very inspired by your recovery.
no, mp may not be for everyone, but it sure seems to be having some very positive results for some.
this alone makes it worthy for folks who have been unsuccessful with heavy duty dosing of abx to take a look.
i hope all the bashing posts don't turn away someone who may very well be helped by the treatment protocol.
i think folks like you, joyce and amy should continue to spread your story despite the harsh criticism others are ready to throw toward mp.
here's what i take away from this thread....many folks have been helped by MP. Many folks have been worsened by MP...this seems to be true for most methods of treatment...in the end you won't know if it will work for you unless you try it...under the guidance of an experienced doctor of course.
oh yeah, last thing...not so sure why there is so much angst around the fact that mp folks are still on abx....so are many of the lt heavy duty abx users..as long as you are healthy and happy and functioning well...who the heck cares!!!!!
warmest regards, lisa
p.s. for all you alternative med bashers (you know who you are), i seem to be slowly regaining my health thru classical homeopathy. it's too soon to call it for sure...but i am definetly moving in the right direction without ABX
Posted by oxygenbabe (Member # 5831) on :
I wrote a long post, but then I decided it was diminishing returns... Actually, I want to add one thing. Lonestartick, your posts are inspiring to me not because of the MP, but because someone very sick for a long time got well and really appreciates the wellness and didn't give up. OTOH, hon, if you are going to be a beacon for the MP, which you may well become, you might want to think about all the failures mentioned on this thread, and as well, some of the serious/dangerous adverse effects...and how those could happen. Set herx aside. Most of those folks had herxes on regular abx therapy. I think it's a good thread, voicing all opinions. There's not a lot more that can be said!
[ 17. October 2007, 09:03 AM: Message edited by: oxygenbabe ]
Posted by Paula Carnes (Member # 10912) on :
LoneStarTick, I don't need to tell you this, but the real animosity toward the Marshall Protocol did not originate here. It was aimed at those of us who were honestly trying the protocol and had honest questions.
However I wish to digress for personal reasons. Perhaps I should start a new topic, but I won't as I still wonder if I should go back on the MP again. Then I think, "Hey, I don't even have a clue what has happened to me."
I was doing great 16 months ago and got my vocal cords looked at to see if I had a polyp, since I can't sing classical first soprano anymore. The lyrnygoscope nicked the back of my sinuses - but no polyp.
Within a day I ran a low grade fever. Then I got thrush and vertigo. I had nystagmus and vestibular nerve damage. I have never recovered from this with constant severe headaches always.
I have bright spots in my brain in two MRIs. Lumbar puncture shows nothing. Two months ago I developed a pupil that is slightly dilated but no other signs of Lyme infection there. No damaged nerves.
The only thing that slightly helps is penicillin. I tried mino., Zithro, diflucan. Nada.
Now I take Lyrica, low dose, and get through the day. That is all. Should I use the word, "Depressed?" That would be the understatement of my entire life.
Please excuse my digression, but I can't see that the MP is the solution to my problem at this point. Was I cured? God only knows.
Paula Carnes
Posted by KelliCA (Member # 13453) on :
Dear Rita,
I'm sorry you misunderstood some of the questions or comments and/or concerns in this thread. You stated:
"The only thing that is not surprising is that Amy stuck around as long as she did. You guys heap abuse on her."
We heaped abuse? All I tried to do, repeatedly, was point out that the protocol has been very dangerous for some folks, and also ask her if ANYONE has stopped taking the drugs so that she could truly use the word "cure" as she did in her title to this thread.
"You don't read the links provided for you. You are unnecessarily argumentative. And then you complain when a legitimate question such as Kelli's most recent one goes unanswered."
Thank you, I think it's legitimate as well. I can only speak for myself, but I read some of the links, then passed on the others, because I've been familiar with the MP for 3-4 years or so. I've also seen people banned from the MP site over and over again when the treatment isn't working, or if they ask too many questions.
"Marshall's molecular modeling predicts that due to Benicar's affinity for the Vitamin D Receptor, Benicar will modify the immune system among any number of other predictions IF you R-E-A-D the MP site."
With all due respect, the MP site is far from objective. Dissent or freedom of speech just doesn't exist there. Many people who used to volunteer there have been banned. As with any treatment, I would highly recommend getting a second and even a third opinion. Or checking other non-MP sites for those opinions.
"As a Lymie who is just starting on the MP, I get angry and have as much clouded thinking as any of you, but the kind of bile I see in this thread is a little overboard."
BILE? I'm sorry, but with all due sincere respect, I think your anger is causing you to overreact to the differing opinions. I can toally understand being angry and extremely frustrated by this illness, but I for one didn't see any 'bile' in the disagreements. Just different experiences, a variety of warnings, and different questions...
I know I'm beating a dead horse here, but I'll try once more. Has anyone been off the MP for 6months to a year or more and remained well? If not, then how can it be called a cure -- for anything?
Kelli
Posted by KelliCA (Member # 13453) on :
Hi Lonestar...
I'll see if I can get my friend to post her story here. She may even be a member, I'm not sure...but also not sure how much of a computer-person she is.
I would just strongly encourage others to look into co-factors like dietary issues and intestinal permeability as she did, as treating those may just improve one's health so that the body can get stronger and be better able to handle other treatments...
k.
Posted by oxygenbabe (Member # 5831) on :
Well I didn't think I'd add more to this thread but I am going to add more to this thread.
I was present at a presentation by a very brilliant researcher/clinician in autism and then spoke with him for a while afterwards. He is using actos in the kids, the study was recently published, they took "naive" (i.e. untreated) kids, 50, and put them on actos for 6 weeks. They measured blood markers of cytokines--8 different inflammatory cytokines. Three went down a great deal (significant statistically). There were subjective improvements in behavior and language as well. Now there is going to be a multisite study with 600 kids that will take two years.
The reason he uses actos is it is an NF Kappa B inhibitor. He started using it in one autistic kid with horrible inflammatory bowel disorder causing him to scream for hours a day in pain, whose insurance company stopped paying for IVIG which was the only thing helping him. Nothing else helped, not steroids, nothing. Actos worked in a few days.
Inflammation gets upregulated in his view by many things from bacterial infections to toxins, heavy metals etc. Something pushes you over the line, a final trigger, into chronic inflammation. NFKappa B, an essential transcription factor in inflammation, once it gets going, even regenerates itself--ie its own heightened presence signals itself to make more of itself. Runaway inflammation.
I mentioned benicar benefitting a few in lyme. He told me the 2 pathways benicar inhibits but I've forgotten the names.
I'm more convinced than ever that tackling the inflammation is important, which is why there's another thread on mangosteen. I'm just not convinced of all the smoke and mirrors of the MP theorizing about "switching on" the innate immune system, Vitamin D (there is such good evidence that, except in rare cases such as sarcoid where the Vitamin D ratios are markedly off, that Vitamin D is good for you) being bad etc etc. Also, it's clear that so many on the protocol didn't tolerate benicar, or were miserable on it etc. For those that it worked for such as lonestartick, once again, that's great and I'm not denying it.
But try to find a theory that explains the successes, failures, and adverse effects. Something that is consistent across all those. Perhaps this is a rather crude way to tackle inflammation that works in those who can tolerate it. There was information on the newswires today that an NSAID (again, I forget which one, I skim a lot of information and it doesn't all stay in my head) prevents progression of lung damage in cystic fibrosis. And certainly there is evidence aspirin, another anti inflammatory, helps prevent colon cancer. Etc etc etc.
There may be other better choices than benicar for many, if they want to dampen inflammation.
If you dampen inflammation, the immune system may simply start to recover from the terrible weight of that chronic inflammation and all those upregulated cytokines.
I asked him what other choices, and he mentioned a product by Source Naturals he's taking, and also feverfew, he is impressed with parthenolides.
There is an entire website on NFKappa B. I pulled out my Dagoba pure chocolate bar (no sugar, just organic chocolate, which I'd been munching on all day) and said, this is medicine for me. Does it inhibit NF Kappa B? He said yes, cocoa polyphenols do. I mentioned the xanthines in mangosteen apparently inhibiting cox 1 and cox 2.
It was all fascinating. But it was a long day and I'm exhausted and going to lie down. But I will research some of this further.
Posted by B R H (Member # 12159) on :
I've spent the better part of a year studying MP & I'm convinced Marshall's pathogenesis for chronic disease is accurate. Whether or not his treatment protocol provides a cure remains to be seen in my opinion. However, I have not seen a single convincing example of treatment failure yet.
The "weight" of the successes vs. failures is not an adequate measure of the validity of the theory behind the protocol. There are far too many variables to make such a simplistic judgement. Patient & even most doctor opinions are far too subjective. Feeling "better" or "worse" is meaningless in this context. Objective measures are required. However, even these are not easily obtained or interpreted.
In my opinion, the proper way to test these theories is to put forth a model, measure what you can, see if it matches the model, & make adjustments as necessary. This is exactly what Marshall (and team) has done & continues to do. I haven't seen any convincing evidence that they are wrong yet. If you take the time to read ALL the evidence provided on the MP website (granted this is no small task!), the conclusion is entirely medically reasonable.
Personally, I've been on MP for about 10 months. I am just starting to see objective measures that confirm I am following the model. My "infections" (topped off by borrelia & babesia) caused hypothyroidism which seems to be resolving on MP. You can read me entire story at the MP website (same username I use here).
I'm very interested in reading more about some of the "failures" discussed here. What are their usernames at the MP website? What criteria was used to determine their treatment failed?
Posted by KelliCA (Member # 13453) on :
"I've spent the better part of a year studying MP & I'm convinced Marshall's pathogenesis for chronic disease is accurate. Whether or not his treatment protocol provides a cure remains to be seen in my opinion. However, I have not seen a single convincing example of treatment failure yet."
Well, then you need to look off the Marshall site, and/or reread some of the posts in this thread. I personally know one woman who had MULTIPLE doctors demanding she stop treatment as it was causing her kidneys to fail.
"The "weight" of the successes vs. failures is not an adequate measure of the validity of the theory behind the protocol. There are far too many variables to make such a simplistic judgement. Patient & even most doctor opinions are far too subjective."
That may be true in some cases, but in the case above, 2nd, 3rd, and 4th opinions all SEPARATELY concluded the MP was a danger to this patient. That's objective if you ask me.
"Feeling "better" or "worse" is meaningless in this context. "
Again re-read the posts in this thread...to suggest people were "worse" is the understatement of the decade.
"In my opinion, the proper way to test these theories is to put forth a model, measure what you can, see if it matches the model, & make adjustments as necessary. This is exactly what Marshall (and team) has done & continues to do."
Good point. The MP team used to say one's 1/25d levels had to be at a certain level. Then, they lowered it and lowered it, totally negating the original theory that high 1/25 d levels caused these illnesses. (Sarc of course an exception.)
"I haven't seen any convincing evidence that they are wrong yet. If you take the time to read ALL the evidence provided on the MP website (granted this is no small task!), the conclusion is entirely medically reasonable."
You haven't seen the evidence, because anyone who posts or had posted studies negating his theories were and are banned, and/or threatened with legal action for libel. Again, read this thread.
"I'm very interested in reading more about some of the "failures" discussed here. What are their usernames at the MP website? What criteria was used to determine their treatment failed?"
I've provided one example here, but others have in this thread and on other boards. I have no idea what their usernames are/were, but I believe they may be the same ones they've used here, and possibly even used their full names in this thread. (And I believe there's a site or two out there that archived some of the original MP threads that were removed...but not sure.)
Respectfully,
Kelli
Posted by B R H (Member # 12159) on :
I've done TONS of reading outside the "Marshall site" - FAR more in other places as a matter of fact.
"MULTIPLE" doctors does not mean the diagnosis was correct. How many doctors believe most Lyme patients are not truly ill?
What did the doctors base their "objective" assessment of the patient's kidney health on? Did they do real GFR testing or did they only consider BUN & creatinine? Assuming complete testing was done (which is actually unlikely), did the doctors rule out immunopathology? If so, how? What interventions were tried to resolve the issue?
It is completely reasonable that chronic infection will spread to the kidneys & that clearing that infection will cause kidney function to appear to or actually decrease temporarily!
"The MP team used to say one's 1/25d levels had to be at a certain level. Then, they lowered it and lowered it, totally negating the original theory that high 1/25 d levels caused these illnesses. (Sarc of course an exception.)"
I'll assume the above quote is a typo because it is not in line with ANY of the "MP theories".
I've looked VERY HARD for evidence that Marshall's theories are incorrect. I have read about the treatment "failures". I'm simply not convinced he is wrong or that the very few failures are conclusive. However, any treatment for a SERIOUS chronic illness is going to have failures. It seems obvious to me that patients that are more ill are at increased risk.
While I don't like that posts have been edited at the MP website (mine included), it is a clinical study website, not a "chat room." It is obvious to me that an open study such as MP is breaking new ground & must be done with great care. There are also many patients with neuro symptoms.
Doctors are welcome to join the Physician's Only forum to discuss the theories of MP. If you doctor hasn't done so, perhaps he/she does not feel qualified? Marshall is certified to TEACH physicians. Maybe if more would take him up on his generousity, they would learn something.
If you can find the websites with the "missing" patient failure reports, I'd love to read them, although I probably already have.
Posted by Myco (Member # 9536) on :
Just a reminder:
Dr. Marshall is NOT off the MP abx/benicar, nor is anyone else. Many have taken "breaks" for a period of time.
This protocol can in no way be called "a cure". Yet.
Posted by B R H (Member # 12159) on :
Since nobody here can offer any details at all for these "failures", not even a username, I can only assume the tales all spring from 1 or 2 cases that are blown way out of proportion. Again, I don't doubt some may have been real or some will be in the future - a serious disease will not be treated without risk!
Also don't forget that your precious LLMDs charge more for a reason. They have to cover their @sses with more insurance because they are all prescribing unapproved treatments for a serious disease with serious risks.
Nothing on this website has swayed me in the least that MP isn't the safest long term antibiotic treatment. The safety of all the medications prescribed by MP at the MP doses is excellent & well-documented.
[ 04. November 2007, 03:53 PM: Message edited by: B R H ]
Posted by gwenb (Member # 7217) on :
"The safety of all the medications prescribed by MP at the MP doses is excellent & well-documented."
I'm sorry but that is simply untrue.
Gwen
Posted by B R H (Member # 12159) on :
Could you please be more specific?
Posted by kelmo (Member # 8797) on :
My LLMD told Marshall HIMSELF that he was WRONG.
Several people in my Lyme support group did the MP for three years.
No improvement.
If it works for you...why are you here?!
Posted by B R H (Member # 12159) on :
I'm simply asking you to substantiate your claims.
This MP "crap" is helping LOTS of people.
I'm certainly no expert on the CME (continuing medical education) process. I assume some medical organization has certified Dr. Marshall to teach subjects similar to those he is responsible for as Adjunct Professor of the School of Biological Sciences and Biotechnology at Murdoch University in Australia.
Posted by B R H (Member # 12159) on :
So what makes your "LLMD" qualified to disprove Marshall's work? The majority of doctors do not have the training to understand research at this level & readily admit it.
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." I have direct experience with MP and objective lab data to document my success.
Posted by charlie (Member # 25) on :
I done told you guys that Rosemary (rosesisland 2000) landed in the ER with dangerously low BP from taking that benicar stuff. TuTu substantiated it.
Of course it just 'conveniently' got forgotten by the vit D avoidance crowd.
I have no idea how to get ahold of Rosemary or I bet she'd elaborate.....
Posted by charlie (Member # 25) on :
this is all I can find on it for now but 81 over 44 is a tad low don't you think?
"Doctors should take the time to really understand the science behind the Marshall Protocol. That way they will recognize that 99% of the time the changes observed in their patients, or fluctuations in lab results are the result of immunopathology and not cause for concern. Otherwise they will often incorrectly infer that changes in bloodwork are somehow due to toxicity from the medications. Severe immunopathology reactions are not a sign that something is going wrong, but only a reflection of the fact that the treatment is actually working too effectively. By sitting down and reading about the MP in depth, they will also develop a greater confidence in the safety of the treatment, so that instead of freaking out when a patient's kidney function temporarily drops, and often blaming Benicar for the situation, they will realize that decreased kidney function is just a result of immunopathology in the kidneys that can be managed. There is simply no evidence that Benicar can affect kidney function - there are even patients on dialysis that take Benicar. It's also important to learn how to counsel patients during flares in which their immunopathology may kick in very strongly in order to help them manage their antibiotics and keep the reaction under control."
ALSO:
"For one thing, ARB medications [like Benicar] have been used in medicine for a long period of time and have not been shown to cause any significant adverse reactions. It is pretty much universally accepted that these medications are safe to use. In fact, at the moment, ARBs are being administered to some cancer patients at doses that are drastically higher than those used by the MP - around 800-1000 mg daily. The standard MP dose is 240 mg a day. Even at these high doses used in cancer, ARBs have not been shown to have any adverse side effects.
The MP antibiotics are taken in very low, pulsed, doses. The is no data showing that antibiotics taken in this manner pose any danger to the patient, and clinically no adverse events have been reported among patients taking antibiotics in this fashion. Some people mistakenly interpret changes in immunopathology as adverse events, without understanding that a rise in symptoms is a necessary part of the healing process."
ALSO
"But when it comes down to it, I feel that MP will work for anyone who has a chronic condition, unless of course that condition is the result of a catastrophic injury. All chronic symptoms are the result of L-form and biofilm bacteria draining the ability of the immune system to function correctly. These bacteria are always percolating. The science behind the MP is extremely sound. Not that it can't evolve and improve but I have no doubts about the treatment."
ALSO:
"Since Benicar is marketed as a blood pressure lowering medication, many doctors don't think outside the box and realize that it has other very important effects that allow it to reduce inflammation and stimulate the immune system. They resist the idea that patients can maintain a normal blood pressure while still taking the ARB.
ALSO:
"The hardest concept for people to grasp is that of the immunopathology reaction - the fact that a rise in intensity of symptoms is not a sign that the disease process is advancing, but a reflection that the immune system is active and killing bacteria. We have been hardwired to equate symptoms with disease, but what many people do not realize is that all disease symptoms are the result of an immune system response. If a person gets infected with a virus, the rise in symptoms they display is not caused by the virus, but the response of the immune system to the virus. Once on the MP, some patients report intense exacerbation of symptoms, severe lightheadedness, or profound fatigue, and are convinced that they are getting sicker. I have to assure them that what they are feeling is the natural result of their immune systems dealing with toxins, cellular debris and the remains of dead bacteria. Europeans are usually more open to the idea, but North Americans have really been brainwashed to equate symptoms with disease. In cases where people have trouble grasping this concept, the biggest hurdle is to get them through the first phase of the treatment when the immunopathology is often strongest. If I have any dropouts, they come from this group - the people who can't intellectually grasp the idea that they need to feel worse before they get better."
Best,
Amy
Posted by B R H (Member # 12159) on :
My blood pressure dropped lower than that early on MP. When it was lower than normal, sometimes I felt worse, other times I felt just fine. My normal BP is ~110/70 mm Hg. Now it's ~100/60 - pretty much exactly the drop predicted. If Benicar is the cause, why has low BP been a transient event for so many, including myself?
From the thread you reference: "I really need to be getting a tan before I go and need to be outside as I am typing this." Clearly this patient is not following MP since she should be avoiding light if symptomatic! Like most protocols, you can't just pick & choose which parts of the treatment to follow & expect to have good results.
My understanding is that the FDA has no upper limit set for Benicar dosing because no dose has been detected that resulted in any adverse event.
I'm not saying there aren't risks in taking Benicar for some people or that there couldn't be undiscovered risks in general. However, scientifically speaking, Benicar's mechanism of action is well understood, especially by Marshall. There has been lots of testing to back up the safety, even at higher doses than normally used to treat hypertension.
Posted by oxygenbabe (Member # 5831) on :
I really did not want to return at this point, and mostly am not looking at the board.
But as for kidney failure & blood pressure, I think the Physician's Desk Reference is a better source than an engineer (Marshall) or a Vancouver physician.
"Special warnings about Benicar
Benicar or Benicar HCT can cause a severe drop in blood pressure, especially when you first start taking the drug. The problem is more likely to occur if your body's supply of water has been depleted by diuretics (water pills). If your blood pressure drops too low, you could also experience light-headedness, dizziness, and faintness (lying down may relieve these symptoms). If you develop any of these problems, contact your physician. You may need to have your dose adjusted.
Likewise, excessive sweating, severe diarrhea, or vomiting could deplete your body's fluids and cause your blood pressure to drop too low. If you feel severely dehydrated, contact your doctor. Be careful, too, about avoiding excessive fluid loss when exercising and during hot weather.
Use Benicar and Benicar HCT with caution if you have a history of allergy or bronchial asthma.
If you have congestive heart failure, liver or kidney disease, lupus, gout, or diabetes, Benicar and Benicar HCT should be used with caution. Both drugs have been known to impair kidney function or even lead to kidney failure. They could also bring out hidden diabetes. If you are already taking insulin or oral diabetes drugs, your medication may have to be adjusted. The hydrochlorothiazide component of Benicar HCT also has a tendency to increase cholesterol levels.
The diuretic in Benicar HCT can lower the levels of electrolytes (salts and other minerals) in the blood, especially if you become dehydrated. Signs include dry mouth, thirst, weakness, sluggishness, drowsiness, restlessness, confusion, seizures, muscle pain or cramps, muscle fatigue, low blood pressure, decreased urination, rapid heartbeat, nausea, and vomiting. Call your doctor immediately if you experience any of these problems.
Likewise, the diuretic in Benicar HCT can cause excessive potassium loss. Signs include muscle weakness and rapid or irregular heartbeat. To boost your potassium level, your doctor may recommend eating potassium-rich foods or taking a potassium supplement. If you think you need a supplement, check with your doctor; do not start taking one on your own. Also check with your doctor before using a potassium-containing salt substitute."
It's likeliest that Rosemary's severe hypotension was a side effect, the first serious one stated in the PDR, and not "immunopathology". In addition, kidney failure is mentioned as a possible side effect of benicar. It is unwise for laypeople on the internet to armchair diagnose people they have never met, when their own doctors should be overseeing their cases and with care.
In fact, the strident denial of legitimate side effects, even dangerous ones, on the part of a few MP adherents looks pretty bad. It renders them far less trustworthy imo.
Okay, back on vacation.
Posted by B R H (Member # 12159) on :
Most of those cautions are directed at patients with specific pre-existing conditions - things any good physician should be aware of or test for BEFORE prescribing Benicar. Also, MP does not use the HCT version of Benicar. The FDA MedWatch is a better source for information on drug safety in general. Here is the latest information on Benicar in particular. Note:
"In patients with an activated renin-angiotensin system, such as volume- and/or salt-depleted patients (e.g., those being treated with high doses of diuretics), symptomatic hypotension may occur after initiation of treatment with BENICAR�. Treatment should start under close medical supervision. If hypotension does occur, the patient should be placed in the supine position and, if necessary, given an intravenous infusion of normal saline (See DOSAGE AND ADMINISTRATION). A transient hypotensive response is not a contraindication to further treatment, which usually can be continued without difficulty once the blood pressure has stabilized."
Note that the hypotensive properties of Benicar do NOT increase with dosage beyond about 40 mg, so it seems likely that there was more to the story than just a "large quantity of Benicar." PubMed doesn't seem to offer any insight. Maybe Marshall is onto something?
I have never made a "strident denial of legitimate side effects." In fact, I clearly stated that "I'm not saying there aren't risks in taking Benicar for some people or that there couldn't be undiscovered risks in general." Nobody can guarantee that ANY medication will not cause harm in some way, but maybe the protection against inflammation when killing the pathogens outweighs that risk for some?
What could anyone possibly have against physicians from Vancouver? Posted by Boomerang (Member # 7979) on :
Good Grief......missionaries sounds like an understatement to me!!
It's like a tag team effort pushing the Marhsall Protocol...no matter how dangerous it is. Talk about an agenda....sheesh.
Posted by kelmo (Member # 8797) on :
BRH
What makes you think my LLMD doesn't have the knowledge to refute Marshall?
I'm not throwing my pearls before.....
It's time for you to leave. At this time our agenda is supplementing vitamin D, the direct opposition to what you are proposing.
Again, you didn't answer my question. I will not reply to any more of your posts.
Posted by B R H (Member # 12159) on :
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At least I didn't go into erudite allusions to Bayesian inference.![[Big Grin]](biggrin.gif)
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