posted
Because I've seen mention of the Cowden Protocol quite a bit lately, I've done a small bit a research on it and came across the website linked to below. I learned that Dr. Cowden lives in Panama, I don't know if he practices medicine there, and that he owns the company that sells the herbs used in his protocol.
But if you hit the link to this interesting on-line article about the Cowden Protocol it will probably be an interesting read for anyone considering this form of treatment.
In it the author analyzes each component of the protocol to determine if there is any logic behind each one, their documented efficacy, and if it is worth the cost to buy from his firm.
She found that she could buy many of the components cheaper elsewhere and that there is scant documentation of the efficacy of some of the herbs.
I hope this info is of use to some people.
Posts: 81 | From Rhode Island | Registered: Nov 2010
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feelfit
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thank you....this is interesting to me. No one is allowed to sell their products on this site. But on Facebook, this doctor has friended every Lyme person in sight...
THIS doctor claims a 80% plus cure rate to those who have failed to respond to abx..
when asked a question, the dr. refers one to his website. Without any personal input at all. this makes me think that he is there to promote his wares.
that said, i have not tried any of his protocol, i do not know if it is effective or not. And to his credit, he was offering a 6 month free condensed protocol through Primary Care Physicians to their first 3 or so patients.
Posts: 3975 | From usa | Registered: Aug 2007
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canefan17
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^^^ I think Dr Lee Cowden is genuinely trying to help Lyme patients. (My biodentist is really good friends with him and speaks very highly of him)
Is he going to make money off of his protocol and herbs? Yes
Do you HAVE to buy his products? No
But don't we WANT help from doctors?
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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lululymemom
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No matter what the product you will always find skeptics trying to discredit them.
Sometimes you have to take a leap of faith with this illness and I think most of us on here are doing just that.
posted
I don't believe anyone has to take a "leap of faith" in treating any disease. There is usually good documentary science on what works and why it works, and an informed patient who does the homework has the best chances of getting effective treatment.
There is also good reason to be skeptical of any and all alternative approaches that claim to be able to cure anything. They have historically proven to be few and far between, if any at all.
Skepticism is a good trait to have when researching expensive alternative treatments.
The fact that a doctor who lives in Panama and does not practice in the U.S. and who owns the company that makes the products he prescribes, and who claims that his products are superior, is enough to raise a red flag for me.
That's skepticism that is well founded.
Just look at the number of charlatans out there claiming to be able to cure Lyme, I waded through dozens of sites and quacks to learn the information that antibiotics remain the 1st and best initial treatment for CLD.
If someone wishes to try the Cowden Protocol, I wish them the best of luck and a full and quick recovery. After all it is your decision, your time, and your money.
Posts: 81 | From Rhode Island | Registered: Nov 2010
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lululymemom
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Do you think I would get favorable comments if I started posting all the skeptical information out there about antibiotics? It doesn't just apply to alternative medicine. No matter what product you are talking about, you will find something negative written about it on the internet.
My daughter treated with abx, I have nothing against them. I helped her through a very rough time. I also incorporated alternative methods and thank God, she is almost completely well today.
Maybe we should talk about the charlatans who are charging outrageous amounts of money who are treating very sick Lyme patients. They don't just exist in the alternative world, they exist everywhere including the medical world.
Let's not discredit any profession and try to learn from these new therapies.
posted
I don't think preaching healthy skepticism is negative or discrediting any one's profession, and I'm not seeking favorable comments.
I simply thought that the article Dissecting the Cowden Protocol, would be good reading for anyone thinking about investing their hopes and money in his protocol.
I don't think one can argue with that assumption.
It's still "buyer beware" last time I checked.
From my experience herbs, diet, acupuncture, etc. can be very effective treatments for some things, they can improve health conditions, but cures have historically been rare.
I plan on using herbs and diet too in my treatment. But I will choose the herbs based on my own research and advice from genuine,licensed Lyme specializing, alternative practioners whom I can look in the face and ask informed questions.
Posts: 81 | From Rhode Island | Registered: Nov 2010
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Lymeorsomething
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What you call "leap of faith" I would call experimentation.
There is often little incentive to study herbal remedies. I believe the UNH Samento/Banderol study was funded by Turn the Corner Foundation.
posted
Argue all you want to, but who, may I ask, dismissed "creative approaches so quickly". Did I do that? I don't think so.
Who brought up "a leap of faith"? Did I do that? I don't think so.
I simply provided an article, Dissecting the Cowden Protocol , that I thought would be good reading for any one interested in this approach to treating CLD.
Obviously you disagree with me, and I'd guess, with the person who wrote the article, though, to me, it seemed well written, well thought out, thorough, and informative.
If any one wants to try this protocol at $500 per month, for who knows how long, let them. I certainly am not discouraging them. I am simply providing information available to any one who types "Dr. Cowden" into Google, and I'm preaching a healthy skepticism before leaping into such a commitment.
Is there something inherently wrong with that?
Posts: 81 | From Rhode Island | Registered: Nov 2010
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lululymemom
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When I used the Leap of Faith comment I meant it for everyone who attempts to treat this disease.
Since there is no "official curative treatment" we do what we can to treat it. Weather that means antibiotics, herbals, alternatives or all three.
Most of the time we do our research, talk to our doctors, and then decide the best approach with the information we have. There's no guarantees, it's a calculated risk. It's a leap of faith.
posted
Well, I guess we can all agree on one thing, treating CLD is a very profitable business for everyone involved on the treatment side of the disease and a very expensive proposition for those of us who seek treatment.
More reason then ever then to be skeptical of each and every outrageous claim (like an 80% cure rate) or that listening to bleeps or hooking up to some machine will cure you.
There is a reason that CLD is looked upon askance and discredited as a legitimate disease by much of the population, the media, and the medical establishment when you take in the entire picture of charlatans, quacks, and quick buck artists selling their snake-oil cures to desperate people who sincerely believe that the list of symptoms for CLD is some vague list of over 400 symptoms (as I saw recently on one website) covering virtually every organ and system in the body.
Yes, CLD is The Great Imitator, it does attack anywhere there is a weakness, it is difficult to diagnose, but the science of medicine is beginning to catch up to it and doctors are beginning to treat it successfully.
If the cost of the Cowden Protocol and the cost of abx is roughly the same, then I would put my money on the abx, long term, for as long as it takes, any time.
That's just my opinion. You can suit yourself with whatever treatment option you choose. It's your time and it's your money, and I wish any of you who chose that option good luck and full recovery.
I encourage everyone to go with what is comfortable to them. If you believe herbs will cure you, then, by all means, go with a herbal treatment.
I'm an investor and as such, a gambler, and I always try to analyze the odds and bet on the most likely positive outcome based on the information available.
And the information available to me and too anyone willing to do the research is that no alternative treatment has ever cured anything: they improve health conditions, they make you healthier, but as for curing anything, please, tell me what cures what?
We would all settle for improvement of our health if that were the only option, be it abx or herbs or any alternate, but solid information and education is the key to making these decisions that could have a serious impact on our health and finances.
Who knows, maybe tomorrow the New York Times will publish an article citing a peer reviewed unequivocally challenged, easily replicated study by a major, independent, medical research firm stating that the Cowden Protocol has been scientifically proven to cure CLD, 80% without resorting to abx.
Then we would all be running to Dr. Cowden's website and the price would probably go up to $1500 or more per month.
But I seriously doubt that that will happen.
Until then, as always, "buyer beware" is a good cliche to keep in mind.
An informed, educated consumer is the wisest consumer.
Would any one argue with that statement?
Or "We all have to take a leap of faith." is that arguable? I would argue that.
Posts: 81 | From Rhode Island | Registered: Nov 2010
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posted
Regarding the statement "We all have to take a leap of faith." , C'mon, that's exactly what we're all forced to do at this point. For some of us it works out. Sometimes people's lives are ruined in the process, whichever road they take.
Yes, we must weigh our options. "Beware", then take a leap of faith, along with a lump of our family's cash.
Posts: 797 | From New York | Registered: Feb 2008
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lululymemom
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Thank you, Carly, exactly the point I was trying to make..
posted
I am on the cowden protocol and have noticed improvement especially with samento and banderol.
I also ask Dr. Cowden questions on Facebook or email and he always answers and gives me specific details.
Thats my experience.
Posts: 186 | From colorado | Registered: Jul 2010
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There really are two sides to this discussion, and I can see both:
1) rajon's view/others: Anyone with a chronic illness - for which the standard treatment either is ineffective or nonexistent for its improvement or cure - is, in fact, open to being taken advantage of by people who just want to sell something to make fast money. Whether it works or not.
2) other patients' view: When you have a chronic illness for which standard treatment is either ineffective or nonexistent for its improvement or cure, you will be willing to try many different things and experiment in order to get well.
From where I sit, you're both right.
I can see that there are marketers and people trying to sell Lyme patients on all sorts of plans and ideas, some more effective and safer than others.
They may not always work, but they had better not cause harm. I think that's how most patients view taking anything, really - allopathic or alternative.
It would be better, though, if their products worked - because how can I know that they are selling me something simply because they can and not because they are genuinely trying to help me get better?
When I'm going to try an allopathic or alternative treatment:
- I do as much research on a product as I can before trying it.
- I look up individual ingredients and read studies on them.
- I learn about the manufacturer and their processes (esp. since I want gluten-free products).
and
- I try to talk to a certified degreed naturopath or LLMD first to see if s/he has used the product with many patients.
If it's a product that's been used by many for years and there is research, I might skip that last step.
It does take more time and extra steps to make this decision, but I find in doing so I make sounder decisions and I spend less money.
I've seen this sort of argument set up which people state as being "pro-alternative medicine" versus "anti-alternative medicine". At its core, I don't think that's often what it's about, though: I think it's about "pro-providing evidence" something works and is helpful versus "anti-providing evidence" something works and is helpful, a lot of the time.
In the "anti-providing evidence" group, testimony and anecdote is enough data for a person to decide that a product is worth trying.
In the "pro-providing evidence" group, testimony and anecdote is not enough data, especially when there is no verification of who is giving the testimony or sharing the anecdote. The "pro" group here prefers more science to back their decision making - and prefers evidence from an independent party with no conflicts of interest if at all possible.
It's all about the level and degree of information people think they need to decide what risks they are going to take.
Why some people need more information and others need less is something I'm interested in learning about. I suspect it has something to do more with the actual or perceived trustworthiness of the source of the information given.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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Oh, one more thing:
I often think a huge sticking point in discussions about such things, the word "evidence" is a problem.
People say that the word of someone else (testimony, anecdote) is enough evidence for them to try something, and others argue that it is not.
From a legal perspective, when one is submitting evidence at court (I know, this is a different forum than a court, but hold on), the evidence used is testimony, documents, photographs, maps and video tapes. Computer files might be in there, and phone call records, and other records or logs.
During a court case, arguments and statements by lawyers are not evidence, and what they say in their opening statements, closing arguments, and at other times is intended to help you interpret the evidence - but it is not evidence.
I think that in a similar way, those who are asking for evidence may be at least partially applying the legal definition in their discussion.
To add more to this, if the person or people requesting evidence are looking at wanting scientific evidence, then that is yet another way of looking at it. In looking for scientific evidence, people are wanting more observable, empirical and measurable evidence that supports a given hypothesis (let's say here, about how well a drug or herb works for a particular condition). For them, testimony and anecdote may not factor in at all. So their reliance on other measurements is much higher.
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I think I'd feel better about the Cowden protocol if someone other than Dr. Cowden was promoting it and indicating it was effective.
The whole energy meridian thing spooks me out a bit. As well and the infusion of energetic frequencies. Say what?
I'm one of those people who could take a whole bottle of Samento, wash it down with a bottle of Banderol and only get a buzz from the alchohol.
The thing is, I know people who have been helped tremendously by the Cowden protocal.
But if it were truely effective you would think you'd find more references on the internet that weren't written by Dr. Cowden.
And I'm not calling Cowden a snakeoils salesman, I think he truely believes in his product. But he's a pretty astute businessman as well.
I've yet to find any reference to any ILADS LLMD endorcing that dates later than 2008. If it were that good, there would be something more recent.
Hopefully, the BWF will undergo a little more scrutiny and really will help us. I'm on the fence, leaning towards it helping me.
Posts: 699 | From confusion | Registered: Jan 2011
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lululymemom,
I can see that. If you've spent the time with your own process making an informed decision, it comes across as insulting for someone else to come in and tell you that you haven't. Exasperating even, at points.
I think one thing that would help in these sorts of discussions is to explain how you came to your decision. It would help the detractor understand, and also, those who are trying to make a judgment about some protocol or treatment can learn from you as you explain it.
I think why those who are in the "pro-providing evidence" group might get riled up is based on two things for which compassion and understanding is needed:
1) They or a family member of theirs may have been taken unfair advantage of, so their trust is low,
and/or
2) They may simply need more information about something to make a sound decision for them to begin with, in order to feel safer about the risks they are taking.
I can say that I have been the sort of person who needs more information, because my thought has been that more information will help improve my understanding of the risks and benefits of what I do. Both - not just the risks.
When people say, "look out, there are people out there selling stuff there isn't evidence of working", I think part of it is a caution and they are trying to protect others from making a mistake - and part of it is they genuinely don't think people have enough information to make a sound decision when they appear to only be making decisions based on anecdote and/or others' testimony.
It's painful to watch threads degenerate over stuff like this, when I suspect both parties probably came to the thread with good intentions and just talked over each other. Part of it is assuming how little or how much people investigate in order to make decisions. Part of it is based on personal experience.
In the end, Lyme patients are all left stuck in a bind because mainstream medicine has been denying us proper treatment early on, for various reasons - and because there are some rather unscrupulous figures who have tried to take advantage of us. It is challenging to navigate the decision of what the right thing is to do at times - we were abandoned by those who should have helped us early on and have been having to do more than our own share of work to figure out how to get well.
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lululymemom
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Stillwater, there are several reknowned physicians that use the Nutramedix herbs.. I come across this all the time when doing my research.
Dr. H. is one that I can show you. I don't keep track of all of them. Here is part of Dr. H.'s treatment protocol and a link:
Other herbs or herbal formulas that I use in my practice include Mora, Enula, Cumanda and Banderol from NutraMedix; cryptolepsis from Woodland Essence; the rizol oils Epsilon, My, Kappa, Gamma and Zeta from BioPure; and Dr. Zhang's herbal products Circulation P, houttuynia, allicin.
Another is Dr. K whom we always discuss on this board:
I reported in an earlier issue on the Enderlein treatment of Lyme disease, which should be pulsed for several weeks at a time. We also use Echinacea root tincture, 1 tsp bid. We use an alternating course of teasel root tincture (15 drops 3 times per day) for 6 weeks and then TOS free cat�s claw tincture (10 drops tid).
And we put her on the herbal treatment, ignoring all the herbal rules; we put her on PC-Samento which is not allowed during pregnancy; we put her on PC -Noni which is not allowed during pregnancy ----- nothing is allowed during pregnancy, but if you don�t treat it, you have a crippled child, or a crippled adult if it makes it into adulthood.
The herbal treatments have turned out to be extremely safe, the herbal treatments that I am recommending, and have worked beautifully in accompanying the pregnancy.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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lululyme,
"Camp Other, I try to do my best on this site."
*nod*
I hear you, and see that you are. My statements weren't necessarily directed towards "you, singular" alone when I said them, but "you, plural" general.
I just wondered if more people explained how they came to their decisions about trying something if that would lead to greater understanding between people with differing approaches.
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Dr k says he has put 900 into remission, Master herbalist B says 95%, Dr. Z says 60%, Dr C says 80%, Dr H says treating those with Lyme who also have Babs makes remission much much harder. I think dr. H being the one who has actually treated the most probably has the best experience with this- with that said he probably is smart enough to know that he can't possibly put a % on how many will get well because after all the thousands of cases he has seen, he SIMPLY DOES NOT KNOW. Early days. j
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Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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rajon said,
"I don't believe anyone has to take a "leap of faith" in treating any disease. There is usually good documentary science on what works and why it works, and an informed patient who does the homework has the best chances of getting effective treatment."
I think you're right, that there often is good documentary science on what works and why it works, and it is important to be an informed patient when making a treatment decision.
How do you go about determining whether or not the studies you are reading are free of conflicts of interest - or if there is a conflict of interest, how much that weighs on your decision to rely on the outcome of a given study? How do you determine whether the outcome stated reliably matches up with the data assessed - or even unstated omissions?
Given my own research, I've pretty much decided that large scale double-blinded random studies have the most reliability, and that's what Ioannidis has found, too. People have tried to knock his meta-analysis down, but most people - even within the scientific medicine community - agree with him, even as it incriminates them themselves.
I research as much as I can to make a decision, and admittedly, knowing what I know now means I have to research the research itself. Well, I always did, by looking for supporting research for *one* study before this - but now? Now it's taken on an additional layer of complexity.
Most people do not want to do this level of research. They either don't have time or are, frankly, too sick to do so. At my sickest, I can't do it either. It's too difficult, especially with cognitive symptoms.
rajon also said:
"There is also good reason to be skeptical of any and all alternative approaches that claim to be able to cure anything. They have historically proven to be few and far between, if any at all."
I think healthy skepticism is useful, and learning what you can about *both* alternative and allopathic approaches is a good idea. I'd be skeptical about both and hopeful about both at this point.
I'd be looking at the data to see not only what data is there, but what data has not been emphasized in a study and what important information that might be left out isn't discussed. Falsifying data is so far a rare occurence, and is easier to avoid when there are enough solid studies by enough different groups that are in agreement.
If there is an allopathic or alternative treatment out there for which there are few to no studies on it, I'd still consider using it if there were no other options left for me to try and it was proven to either be safe (no to low risk) with moderate to high gain - or somewhat risky with high gain.
I think the point at which everyone squirms and gets a little uncomfortable over in any case is over the risk factor.
And this is not the easiest decision to make, but I ask you this: If you have tried allopathic treatments and they have either failed or your body cannot handle them (for one reason or another, such as allergies, elevated liver enzymes, bad drug interaction, etc.) what do you do next? How do you decide on an alternative treatment, or would you decide not to try one and just wait until something new and allopathic came on the market to try that?
Most people who are very ill would not want to wait, they'd want to try something else to relieve their suffering. The issue then becomes how best to go about deciding what to do - but that was the same issue they were faced with *before*, with allopathic medicine.
"Flagyl made me feel like utter crap and there's some evidence it could give me cancer, but if it took care of Lyme disease, I was willing to try it." That's the kind of thing I found myself saying. Is that reasonable, or is that unreasonable logic?
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Just goes to show you, we all have a different presenation of this disease. I hope I didn't offend. When I'm tired, I seem to use less words and I can appear terse when in fact I'm just beat. I apologize
Some people swear by Cowden, and I believe them. Just didn't work for me.
BWF have worked quite well for me and my son, but not for others.
The same can be said of most ABX commonly used in Lyme treatment.
Too many variables and too little real independant peer reviewed research. That's the gist of this whole discussion.
Posts: 699 | From confusion | Registered: Jan 2011
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Stillwater, I'm confused which Dr H did you think I was talking about? I was talking about the one in *** ny? And again I must say that this Dr H seems the most reality based of the lot saying how hard the complex of disease are to fight rather than sticking to some sort of "positive" semi-fictional story about how "good" he is and how well X % of "patients" always do. j
***edited out the city*** discuss thru PM
[ 03-04-2011, 05:27 PM: Message edited by: Lymetoo ]
Posts: 268 | From new york city | Registered: May 2008
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"Too many variables and too little real independant peer reviewed research. That's the gist of this whole discussion."
Yes. This.
There is research related to each individual piece of the puzzle - but not enough to put together a cohesive picture yet. And that's what we need.
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"There is research related to each individual piece of the puzzle - but not enough to put together a cohesive picture yet. And that's what we need."
YES. If this were IBM or Google there would be no stopping them, all ego's (except the ceos) would be put against the wall and strangled and real collaboration and results driven science would ensue- alas this is not a "major" situation yet so this sort of big time effort will have to be at the grass roots, ever so slightly working its way up the ladder. j
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sparkle7
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posted
It's a complicated issue. The bottom line is that we don't have reliable testing for Lyme or the co-infections. So, how do we know anything works - especially for chronic Lyme?
I got the Cowden protocol for free. I took it for 6-9 months at least. It didn't help me. I did "herx" from some of the herbs, particularily cumanda & quina.
In my case, I had a clinical diagnosis - so, I do't really know if I actually have Lyme. I think some of the tinctures are over priced & can be gotten elsewhere for less money in other brands or from other sources.
Something like quina is quinine. So, it does have a long history. I think you have to research the individual herbs. I'm very happy that Dr. Cowden offered the herbs for free to patients who could not otherwise afford them.
I think the Cowden tinctures have their uses but you do have to study the larger aspect of herbal medicine. I believe herbs can be effective. Many people don't get well from $10s of thousands worth of abx, either.
It's a difficult & complex illness. We really need more funding to study all the aspects of Lyme including accurate tests. Unfortunately, there's a huge lack of funding for studies compared to other illnesses.
So, people try what they can to get well. Some people really can't tolerate the drugs - so, we do need alternatives.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
I see Dr. H too. For me he is using both cowden and white although I do think he more confident in the white formula.
Posts: 186 | From colorado | Registered: Jul 2010
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sparkle7
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PS - I am a bit partial to Nutrimedix since they gave me the herbs for free. I just read the review of the protocol "Dissecting the Cowden Protocol". I think it's a pretty fair assessment.
I think you can find better ways to go about dealing with Lyme but it's still not easy whichever way you go. The drugs aren't really proven either. Some people get very ill from the side effects.
I've seen some here do well with drugs & others do well with herbal or alternative approaches. Some don't do well with either, as well.
It's all about educated guesses & taking a risk.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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"It's all about educated guesses & taking a risk."
Exactly.
I think that when people argue from their approach, a lot of it is over an assumption of whether or not the other person is taking an educated guess and an informed risk versus being completely random or nearly so about their choices. Which is why when people are making a decision or made one, I've said it's good to explain how you came to the conclusions about it that you did.
Taking Flagyl was not an easy choice for me and it may have turned out to be effective but I couldn't continue taking it. It did come with risks and for me as an individual it was higher risk because of previous experience. I thought the benefits outweighed the negatives - or more like it, the benefits were supposed to have made struggling with the risks worth it.
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This turned out to be quite a good discussion.
Thanks to Camp Other for the thoughtful analyses and to everyone who added their two cents.
I think a discussion like this helps people who are in the decision making process.
I thought the link I provided in my original post (Dissecting the Cowden Protocol) was a well written piece, and I'm glad some people read it. I would certainly study it over if I was going to use the CP.
Posts: 81 | From Rhode Island | Registered: Nov 2010
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rajon,
You're welcome. I appreciate good, thought-provoking discussions, too.
By the way, I just looked at your link for "Dissecting the Cowden Protocol":
It was pretty informative in terms of explaining which herbs were used and how, provided some warnings regarding use and side effects, and also the reviewer mentioned the expense.
I think it's good for explaining what the protocol contains and potential for expense and how to lower it. What I'd like to see that isn't there is more about Cowden himself, his background, and how this individual fared on his protocol. It's not so much a review of the treatment arc as it is an explanation of the plan's components.
Also, any citations for the applied use of any of those herbs would be useful... I like having data I can refer to and use to help me make a decision. I already have to look some up to make sure they don't affect preexisting pre-Lyme conditions I have.
The mention that people are paid for making endorsements is off-putting - if an LLMD or an NP did something to help me, I would mention it for free and think offering to pay for a testimonial is more likely to lead to unreliable endorsements due to the incentive involved.
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sparkle7 said,
"It's a complicated issue. The bottom line is that we don't have reliable testing for Lyme or the co-infections. So, how do we know anything works - especially for chronic Lyme?"
I can say a bit of how I do it, and what my thinking process is so far?
With me, one thing simplified the situation for me: I knew I got bit by a tick and when, and got very sick shortly thereafter. So my condition isn't something I had to "hunt for" as much as others have. I was textbook, and it was clear from early on how the system failed me.
I make my decision from two basic assumptions:
1) I did get a bacterial infection plus coinfections. There is no denying this. I had strong symptoms after the bite and positive tests. I may still be infected. (I really truly wish there were some way to be sure of this.)
2) My immune system is compromised. It may have been compromised *before* I got bit, as I had been exposed to a lot of bad mold in my house over time, developed asthma when no one else in my family had it, and later tested positive for an immunodeficiency.
So my approach has been to do antibiotics first - especially antibiotics that have been around for a long time and have been known to help treat Lyme in many patients.
When I react poorly to antibiotics and it is a side effect, I decide to either ride it out because it often improves - or if it is too severe, I stop treatment and consult my LLMD. I may take a break between treatments and make sure I have a healthy diet, lower stress, and take probiotics between treatments.
I won't use supplements and herbs if I can get most of what I need through quality food and teas. I've also found that in my experience, more is not necessarily better and additional supplements and herbs on top of antibiotics have had a negative effect on my liver. (It should be noted that this may be because I have already been on allopathic drugs for conditions I had pre-Lyme and continued most of them until recently.)
The main exception seems to be magnesium and B complex supplements, since I am on a gluten-free diet and have been tested and found positive for these deficiencies.
When I am ready to try again, I try more of the same antibiotic/antiprotozoa treatment or new antibiotic/antiprotozoa treatment.
Because of how my body has responded to various medications, by default and not by design, my treatment has looked like "pulsing".
I may at some point decide not to continue to take antibiotics if more evidence comes to light that other treatments are found to be more effective or if I do not respond well to antibiotics any more.
Independently of this, I am concerned that they have a negative long-term impact on me and would like more studies on this effect. Because this interests me, I post articles related to the issue on my Friday Four edition.
I would consider an herbal protocol trial after I did much research on it and found supportive studies that - by my criteria - gave enough evidence that the herbs were safe and effective to take. I'd probably be more interested in whole organic herbs grown locally than pills, and would need more research on suppliers to decide on pills because of variability in production and quality as well as cross-contamination risks.
Whether I am doing antibiotics or decide to do herbs, I find that getting adequate restful sleep, hydration, acupuncture, hydrotherapy, and gentle massage can help with both physical and psychological symptoms of chronic illness. So I try to do these as I can.
What has worked so far in terms of improvement has been treatment for Babesia more than anything. My initial treatment for Lyme disease also got me to a stable point where I was working for a while, then relapsed so I had to quit working. To this day, I am not sure if Lyme disease has really been the issue as much as coinfections - which if I recall correctly was something Pamela Weintraub also suspected in herself.
I'm still trying to figure out what happened to me, and to everyone else with similar experiences.
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sparkle7
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posted
My case was very different than yours, Camp Other... I was ill for 9 years before getting the Lyme diagnosis.
We all have very different experiences of this whole situation. I know people who had a big mold issue, too. We have to take all of these factors into account.
That's why there is no "one size fits all" treatment. I suppose that's the case with other ailments, as well. The Lyme merry-go-round is pretty difficult to sort out, though.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Camp Other
Unregistered
posted
sparkle7,
*nod* I'm aware it's different for others. Some are in a similar situation to mine, where the cause and effect was obvious - some are not. I am sorry you were sick for 9 years without diagnosis - if your story is like others, I surmise you were diagnosed with other things or just shrugged off first. I'm sorry.
I do wonder how much my earlier exposure to bad mold had an effect on my immune system. I'm still doing research on that. I do know that with Mepron I've gotten better than anything else I've taken and I found out it has antifungal properties - so it does make me wonder about fungi's effect on me.
I don't think there is a "one size fits all" because we do not know what was in the tick(s) that bit us. That's part of the problem, right there - even if we improve diagnostic testing, it is only going to be for microbes in ticks we have already identified. Microbiologists are discovering new microbes in ticks all the time, and we don't know yet if they are infection-causing in humans.
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sparkle7
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posted
re: we do not know what was in the tick(s) that bit us
---
Oh you mean like this - Crimean-Congo hemorrhagic fever (CCHF)
I just saw this on a fictional TV show I was watching! Shocking... & I thought TBE (Tick Borne Encephalitis) was bad.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
let me say this, I worked with many people in Lyme tx, IV antibx who had been on many typical oral tx with little success or relapse. some where improved, some not. typically infectious disease MD's do not offer these complimentary therapies and patients are left with nowhere to turn for resolution. Because if this I remained in denial for 3 years, when I began to suspect that my symptoms could be LYME. I knew the MD's I had heard of could not help me. Then one, who also has a naturopathic bend and I am so grateful, so much improved after a year. he gave me this article to read with my first bottles of samento & banderol http://www.townsendletter.com/July2010/sapi0710.htmlPosts: 40 | From CT | Registered: Dec 2010
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tick battler
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posted
Since I have been researching lyme for the past 4 years to heal my family of 5, there have been three primary well respected herbal approaches to heal lyme: Cowden, Buhner and Zhang. Now Byron White is here too.
These are well known and respected healers who are not charlatans. As we all know, there is no one approach that works for everyone.
Time will tell, but I feel we have eradicated lyme/coinfections in all 5 of us using Nutramedix herbs: Samento, Cumanda, Enula and Burbur, along with GSE. We did not do the exact Cowden prototol but just used the above herbs along with some homeopathic remedies and other supplements. My children and husband did years of abx prior to this and did not see recovery until we switched to the herbal products. My practitioner personally knows Dr. Cowden and speaks highly of him. They both utilize electrodermal screening to assist in formulating the protocol.
The fact that Eva Sapi's study showed that Nutramedix Samento fared better than Doxy is nothing to sneeze at. Might even be worth a closer look for you skeptics.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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of how long it takes to eradicate the parasite from your body. It reinforces for me the need to be patient and to understand that it is a long battle and needs a long term approach.
Like Sparkle, I've had the illness a long time without diagnoses, 10 years at least, and am only now feeling pretty certain that what I have is Lyme or that it can at least be treated as people treat CLD.
I got all the tests and then all the shrugged shoulders and kept presenting the same symptoms over and over to my VA doctors till three years ago I got pi$$ed and turned over the apple cart and had VA administrators skittering hither and yon and they finally assigned me a good doc to work with. It still took nearly two years to get prescribed Tetro but with absolutely no knowledgeable follow-up, so when I got worse and worse I had no one to ask what was going on. Now I think it was herxing which sort of confirms that I do have CLD.
Now I feel encouraged to move forward and this site and all the brave folk here have really helped me.
So, a big thanks to you all.
Posts: 81 | From Rhode Island | Registered: Nov 2010
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Maybe others on here, like me, have heard about Bryon White Formula's and the A-L Complex and are curious so if that's you, click the link. What you will see is the label on the bottle.
The one source I checked sells this formula for $89 and it contains 900 doses making it cost effective, imo, at 4 to 20 drops per day.
Posts: 81 | From Rhode Island | Registered: Nov 2010
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sparkle7
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posted
It seems a bit expensive... I've seen mixed reviews of these products. It may be a good idea to look around or post a new thread to see if people are getting good results with these products.
With herbs, it usually takes longer for the results to pan out. If someone feels better right away, it might be the placebo effect. Nothing wrong with that but it does take time to see if things really are helpful in the long haul.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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sparkle7
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posted
PS - you may want to start off with a good parasite cleanse type of program. I think it may be a bigger issue with people in Lymeworld than most expected.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
Thanks for the link - it still doesn't explain where everyone heard about it, though? Was it through their LLMDs individually, through this board - or somewhere else?
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Personally I would go with A-Babs or A-Bart before considering A-L
Bio-Resource only sells to Docs but there are places online where you can purchase the Herbs.
PM me if you need the Link
Paul
Posts: 925 | From Connecticut | Registered: Aug 2010
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Camp Other
Unregistered
posted
Paul Mall,
So did you first post about Bryon White here, and that's how everyone knows about it? Or was it elsewhere? Just seemed like a lot of people were talking about it all of a sudden, and I wondered if a particular LLMD was recommending it for all of his/her patients.
quote:I believe the UNH Samento/Banderol study was funded by Turn the Corner Foundation.
I spoke to Eva Sapi, and that study wasn't funded by anyone but the university (her words). You're making assumptions, and unless she lied to me, your assumptions are wrong.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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Gou Teng, Cat's Claw , Noni , Sam Bong , Neem , Curcuma Xanthorrhiza , and Yarrow
Paul
Posts: 925 | From Connecticut | Registered: Aug 2010
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richedie
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Member # 14689
posted
I am confused, which are most people using - Byron White Herbals or Cowden? Which tends to be more successful?
I have met people getting well on the Cowden or modified Cowden. Not sure about the Byron White Herbals.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
the only 2 LLMD's I know personally both treat with Byron White Herbs
Paul
Posts: 925 | From Connecticut | Registered: Aug 2010
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richedie
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posted
Thanks Paul, do you know why they choose those over the Cowden?
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
from what I understand the Byron white Herbs are 1:1 Herb to Alcohol ratio which is very potent
where most herbal tinctures are Near 4:1 (4 parts alcohol 1 part herbs)
I did not get information from the LLMD's as to why they prefer this protocal but I could get that information for you next month if I remember to ask.
Paul
Posts: 925 | From Connecticut | Registered: Aug 2010
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richedie
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posted
Thanks Paul, but couldn;t that be a bad thing? I know Dr. B says no alcohol since it can weaken immunity and also the body treats alcohol like sugar.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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richedie
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posted
I thought we were supposed to avoid alcohol?
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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sparkle7
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posted
I don't think it's a big issue if you take a tincture (few drops) of alcohol. It's not like you are having a martini or something...
You can always put the tincture drops in hot water to evaporate the alcohol off. You may make the tincture a bit less potent, though. Depends on the herb... or how sensitive the person is.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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richedie
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posted
Actually puting them in hot water does not evaoporate the alcohol. There was a study that showed it takes about 2 hours to evaporate the alcohol.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
I have done oral abx, Cowden & Byron White (with Dr H) and the Byron White formulas - ABart & ALyme - are really really helping.
Posts: 360 | From New York | Registered: Oct 2009
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