The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Cowden Lyme Protocol

Discussion in 'Lyme Disease and Co-Infections' started by Daffodil, Jul 30, 2014.

  1. Lou

    Lou Senior Member

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    How strange Banderol works so well for me and does nothing for you. As you say, perhaps a different species of babesia. My night sweats, drenching ones, started with or very soon after first symptoms of Lyme, if I take Banderol the sweats are relieved, if I don't they're right back. So, my experience, whatever Horowitz may claim, is that it works.

    Thank you very much for taking the time to offer other suggestions for babesia treatment. I'll try them one at a time, see if I can beat back this beast for good.
     
  2. Alea Ishikawa

    Alea Ishikawa

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    Although Buhner's basic protocol is considerably cheaper, I've come across patients saying it does not adequately address co-infections, or that Cowden helps with one or more co-infections. I think Buhner himself also admitted that area needed some more work; he released another book and updated his protocol, but I do not know enough to comment on its effectiveness vs. Cowden.

    There's quite a bit of feedback on Cowden. Buhner reports a 70%+ cure rate and 5-10% non-responder rate. Cowden reports a similar "success" rate. In contrast, I've heard the Zhang mindset is that you live in "harmony" with Lyme, implying that it's never fully cured.

    Cowden is maybe ~$1.5k/year with discount (>$3,000/yr regular). They offered 6 months free to patients under a special program, but no idea if that's still available. One person tracked full Buhner protocol with co-infections at $3,600+/yr. Zhang at $3,600/yr. Byron White $90/oz. (posts online seem to indicate they require buying from a practitioner which can mean travel, appointment costs, and possibly a price markup). The Jernigan clinic is five figures for 2 weeks of treatment.

    The Condensed protocol is supposedly more effective and less costly than the old regular. Just a note, though, that Cowden may have updated his protocol since (maybe that's the "Condensed Cowden Support Program"?) It might be a good idea to ask NutraMedix for the latest and greatest protocol for your situation.



    It seems it's better in general to be on some protocol for Lyme than none at all. Also heard it's best to do every herb you need and can reasonably tolerate, as going on only part of a protocol may not be as effective (I have reservations about Zeolite, however). Pulsing might help address the cyst form. Cowden also says to continue treatment 2 months after being asymptomatic. Considering that the cysts are supposedly viable for up to 10 months, I'd personally do the protocol for a minimum 10-12 months if able.

    It might be possible to go on Buhner while doing antibiotics, then switch to Cowden after antibiotics are out of the system.

    If Lyme is the only issue - no co-infections - then Buhner's basic protocol might have similar effectiveness but less cost.
     
  3. Dufresne

    Dufresne almost there...

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    Buhner recommends cryptolepis, brucea javenica, sida acuta, wormwood, and a few others for babesia. All of these are at least somewhat effective and the best herbs available for the infection. He also has a strategy for mycoplasma, bartonella, and the other TBD's. I think he's the best bet for treating with herbs as far as co-infections go. I believe it's the Nutramedix line that doesn't do much for most co-infections. It's certainly not sufficient for babesia.

    The following is a good overview of his protocols:
    http://www.betterhealthguy.com/images/stories/PDF/BUHNER CONF NOTES.pdf
     
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  4. bertiedog

    bertiedog Senior Member

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    I did start off with Buhner herbs plus a few others the herbalist gave me but I found it a nightmare trying to swallow 3 capsules of 3 different herbs 3 times daily. You need so much liquid to get them down and that isn't good for your digestion because you take them with meals so you are hugely diluting your stomach acid. Then you can end up with a whole lot of gastric issues and also bugs won't get killed off naturally by the acid. I have to take betaine with main meals anyway so you can see how I would end up with more problems.

    Its so much easier to take the Cowden liquid tinctures because you take them at least half an hour before meals and its easier to make up a dose in a glass bottle and take it with you if you are going out.. I do this all the time and it has become automatic for me to take my glass bottle with me wherever I am going!

    Pam
     
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  5. bertiedog

    bertiedog Senior Member

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    If I don't take my 5.5 or 6 mg Pred I woud be dead because I am adrenal insufficient or have very little adrenal function left so no option to stop steroids and I have been on them for 13 years now.

    With regard to the immune system problem I have been ill since 1979 plus the adrenal thing so I don't expect my immune system to be good and strong with only 10 months of herbs, I believe it will take many years to get a real improvement in my immune system but at least I can be delighted with having energy in my legs virtually all the time. Because of the adrenal issue I have hardly any steroid left in me during the night so wouldn't have normal energy then, I have to wait for the effect of the steroid to kick in but my body wakes me anytime around 4.30 or a bit later for my first 2.5mg and then I go back to sleep for a few more hours so thankfully I don't have zero steroid in me when I get up. If I didn't take it in this way I am sure I would feel terrible for the first few hours of being up because I know that if there is insufficient cortisol one has zero energy and lots of pain.

    Pam
     
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  6. justy

    justy Donate Advocate Demonstrate

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    @bertiedog - any idea what would cause Cortisol to be in normal range on waking and then plummet by around midday and stay that way until the following am. This is my rhythm according to the 24 hr saliva and matches how I feel - if I need to go out or do anything I always do it in the morning and by lunchtime I feel just dreadful. Some food perks me up enough to get me through and then I am down and out for the rest of the day...
     
  7. xrunner

    xrunner Senior Member

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    It seems to me both flawed and biased.
    If you look at the data distribution of the tinctures, when looking at levels of concentration vs. effectiveness, it seems all over the place (see link)
    Then if you want to compare combinations of herbs to abx, why not compare combinations of abx as well which are much more effective than single abx.
    And if you decide to pick doxy for comparison, this is a bacteriostatic abx so why look at only few days of antibacterial activity rather than longer periods of time which it needs to do its job.

    Also if you test tinctures, even if you control for their alcoholic content, in vitro you can't really eliminate or isolate its antibacterial effect from the overall effect of the herbs. So what you have actually tested is a combo of herbs and alcohol.
    Note that in the study alcohol alone (at a fixed concentration) performed better than doxy in killing round bodies and better than certain concentrations of both herbs.
    But alcohol doesn't treat Lyme or other systemic bacteria, otherwise we could cure ourselves with 30 drops of whisky or vodka twice a day.

    http://www.townsendletter.com/July2010/sapi0710.html

    Lat but not least why not compare also other herbs instead of just a single specific brand?
    Perhaps I'm too cynical but I can't stop thinking that if this study had included some generic form of Cat's Claw and other anti protozoan herbs it could have destroyed the commercial interests of the brand in question.

    My own view is that for testing the antibacterial activity of both abx or herbs, in vitro studies are useless.
    It's what happens when they're metabolised that matters. In fact a lot of herbs have great anti bacterial potential but very few if any do perform in vivo.
    Brorson for e.g. found GSE very effective esp. for cysts. I tried it and it didn't work at all. Willy Burgdorfer himself mentioned colloidal silver as potentially helpful for Lyme. I tried it and it didn't work. Oregano in vitro kills more or less every type of bacteria but it didn't work either.

    I'm not saying that herbs are useless in the treatment of Lyme.
    They can be helpful but they work by other means, namely modulating the immune response, most have anti oxidant and anti inflammatory properties so if you find herbs that work for you, they can reduce symptoms quite a lot and make you feel better. For e.g. a combination of cat's claw, andrographis and resveratrol got me out of bed when I was very unwell. My mum can't tolerate abx and for a few years now she's been on a few herbs, Cat's claw mainly which helps her quite a bit (samento e banderol never worked that well for us).
    Problem is what happens when you stop taking them?
     
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  8. xrunner

    xrunner Senior Member

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    Hi Pam,
    It's good to hear that the treatment works for you and makes you feel better.
    In my post I just highlighted a disconnect between what you reported about the state of your immune system, test results and your recovery.
    A recovery from Lyme should be reflected in the immune system recovering. So if one feels much better that's usually accompanied by an improvement in the immune parameters. CD57 (but not only) is a good marker to keep track of for avoiding relapses but also verify that whatever treatment or herbal protocol you're doing they're actually helping with Lyme.
    Best wishes
     
  9. xrunner

    xrunner Senior Member

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    Zhang is probably right. Having followed the Lyme boards for a few of years it seemed to me that rather than cure it would be more accurate talking about "symptomatic improvements" which require you to keep taking the herbs.
    As for Horowitz claims about the effectiveness of Samento and Banderol in "curing" Lyme, I don't understand then why he keeps prescribing abx. If the "cure" rate was that high, it would be logical to just treat patients with herbs and so also avoid the side affects of certain abx. Unless he actually meant improvement in symptoms rather than cure.
     
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  10. Dufresne

    Dufresne almost there...

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    I've had some of the same disappointing experiences with herbs for borrelia. Colloidal silver did nothing for me, as did oregano oil. GSE produced the same effect in me as Tinidazole so I suspect there is something to that one for cysts.

    My recollection is that Horowitz claims the Cowden herbs are fairly effective against borrelia. Moreover he seemed surprised by their effectiveness and goes on to note they often produce more of a herx than ABX. He explicit says that Chronic Lyme patients have to continue indefinitely with some sort of low-dose therapy to sustain their improvement, that borrelia will persist in 99.9% of people with Chronic Lyme.

    I remember reading that KDM has information about the Cowden Protocol in his office.
     
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  11. justy

    justy Donate Advocate Demonstrate

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    KDM uses herbs (Samento, Banderol etc is this Cowden?) AFTER antibiotics, but finds people may still herx heavily on them even after oral and IV abx. I asked him about herbs as I cannot tolerate any antibiotics due to mast cell issues and he said the herbs would be too strong to begin with and dangerous for me to take.
     
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  12. bertiedog

    bertiedog Senior Member

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    I think its pretty typical for people with ME/CFS to have this picture. It was described to me that as one is lying in bed all night with nothing much to do then the adrenals can pump out sufficient cortisol (it should be in the upper third of the range preferable) and then when you need to being doing physical stuff and getting on with life the adrenals for whatever reason cannot produce sufficient. They probably wouldn't be able to provide sufficient in an emergency situation either so one could go into a state of collapse for a while or we learn not to do much because we know we can feel so ill.

    For me I had a messed up pathway from pregnenalone through progesterone into cortisol. For some reason my progesterone is always above range even though I am menopausal, it doesn't seem to break down as it should to the final stage. Also my DHEA before treatment was very high at all points of the day. The private Endo who treated me explained it like my brain knew I needed more cortisol but the adrenals couldn't supply it so instead they shunted out high amounts of DHEA. This was a sign of a very long standing condition I was told which fits with me loosing 4 pints of blood immediately after childbirth in 1975 and a mild Sheehan's Syndrove developing.

    I was started on hydrocortisone but I needed around 22.5mg for it to really make a difference but I do remember it being the first drug I ever had that I wanted more of! Usually I overreacted to any medication in a very negative way but that no longer happens thankfully. I haven't raised my dose of steroid either in the 13 years I have been taking it unless I have a bad infection. Its usually either 5.5mg Prednisolone or 6mg

    Pam
     
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  13. RML

    RML Senior Member

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    I put my order in with Nutramedix last Friday, and 2 big boxes arrived this morning with my Cowden herbs!

    I didn't order the full 9 months, was too cautious about it, just in case they don't work for me/ react badly to them.
    I think I ordered 3 or 4 months to try.
    I am going to have to study it now carefully, the regime seems complicated, or at least to my dumb Lyme brain.

    It may work or may not, but I feel it is worth a shot! Who knows, everyone seems to react differently to all kinds of treatments. I found great improvement before on Andrographis and Olive leaf extract, and I am so sick of abx, oral kind anyway, and I can't afford any more trips abroad for IV's.
     
  14. zzz0r

    zzz0r Senior Member

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    Anyone here started cumanda andfeeling depressed with even one drop?
     
  15. Thinktank

    Thinktank Senior Member

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    I've used cumanda but it didn't give me a depressed feeling.

    Maybe you are experiencing a herx. reaction.
    Buhner says that if a herb doesn't feel right to you then just drop it and use something else with a similar action.
     
  16. dadouv47

    dadouv47 Senior Member

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    Hello
    Wanted to know if some people have experienced extreme fatigue while increasing cumanda?
    I started Samento 3x1 and cumanda 2x1 friday, and i was responded pretty well ( was a little bit worse but nothing really significant) but yesterday went up to 2x2 cumanda and i'm now extremely tired.
    I also started antibiotic (rifaximin) yesterday, so I don't know what can cause the fatigue.
    Thank you!
    David
     
  17. bertiedog

    bertiedog Senior Member

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    I don't think I ever experienced just fatigue as a side effect, it was only in the beginning really that I got things like swollen glands in my neck or nasty sore throats which wouldn't make me feel great

    When I crashed I got very weak but that was because my electrolytes had been messed up because several of the herbs I was taking were vasodilators and/or duiretics but I am probably an exception because of my compromised adrenal function.

    Perhaps you should only change one thing at a time so that you really know if something is negatively affecting you? (I have made this mistake so many times!)

    Pam
     
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  18. RML

    RML Senior Member

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    I had serious fatigue, as well as other herx reactions, when I first started herbals and for many months in the beginning. But that was mainly Samento and Banderol reaction. I don't think I had much reaction or effect from Cumanda. I was able to increase drops rapidly on that one, while S & B was slow and low for many months. But if the Cumanda is hitting something in your system, fatigue could well result. I do agree, that adding things individually and spaced out a bit helps pin point what is causing the side effects or improvements.
     
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  19. dadouv47

    dadouv47 Senior Member

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    Thank you both for your answers! Really it's hard to tell which herb or med is causing the intense fatigue. I started a lot of meds at the same time. Maybe it's a mix of everything...
    I also think cumanda is not the problem because everything i read on the forum was more about samento/banderol reactions than cumanda's, like you experienced also. But for precaution I will try to stay with my actual dose and just wait a few more days ( a bit more than the 3 days expected) before increasing cumanda again.
    Regards
    David
     
  20. alice71

    alice71

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    So are you all taking tge cowden protocol for M.E. OR Lyme? Has anyone had significant symptom improvement with M.E. taking the protocol?
     

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