The 12th Invest in ME Conference, Part 1
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Cowden Lyme Protocol

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

  1. 2manyhobbies

    2manyhobbies

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    Charles There are actually 2 sources of the Samento type--Nutramedix has Samento -- Nutricology has Prima Una Da Gato and in my experience they are identical with the Nuticology being a bit less expensive.

    Sue, Has your MD ever done a CDSA to check for any other gut pathogens? By this time it would seem that your B12 levels would be really low after that much disbiosis.

    Further your neurological problems could be tightly tied in with B12 and or methyfolate as they are synergistic and need for proper mylineation to occur.

    For sure the herbals work and are powerful stuff--but they don't create the havoc that drugs do.Samento is immune building while antibiotics are immuno suppressive and cause an acid Ph in your chemistry.
     
  2. bertiedog

    bertiedog Senior Member

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    All this goes to show show how individual we all are. I got up to 30 drops Samento and Banderol within a month with no problems and have also been at 30 drops of Cumanda without any problems. I take the doses twice daily and also add Burbur and take 3 Serraptase. I started this protocol on 30 August this year and haven't really noticed any changes one way or the other.

    I did think my immune system might have been getting a bit stronger but now I am starting to struggle with throat viruses which make me feel really crap and unwell. Its the 3rd time this winter that this has happened so far (have one at the moment), last winter it was 8 viruses plus I needed antibiotics several times then.

    Also I take Andrographis and 9 Japanese Knotwood daily. I haven't really herxed at all but I do still get horrendous, frequent migraines and don't know if these are connected. I have regular massages and sometimes there is a lot of pain where the lymph glands are and it does feel like my body gets clogged up so there might be more going on than I realise.

    Pam
     
  3. Daffodil

    Daffodil Senior Member

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    Thanks a lot, 2many. Yes..he has done stool analysis and several years ago, I even had rectum swabbed by Dr. Cahill in Manhattan.

    I inject B12 10 mg two to three times a week and have been for a long time.

    Can you believe I took 1/4th drop of Samento only 3 times so far - twice accidentally took it with food - and even then it seems to be knocking me out?

    Anyway, if you can think of anything else to help my 110% screwed up brain, please let me know.

    my CD8 is always high and I know that indicates virus but no one can ever find anything...

    The only thing I know is that Rocephin cleared my fog up after 21 years of hell, but I have yet to figure out if this was due to its action on bacterial translocation or Lyme.

    xoxo
    Sue
     
  4. Daffodil

    Daffodil Senior Member

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    Hi Pam. have you ever tried antivirals?

    I had no response - good or bad - to Doxycycline when I tried it in 2007, but now it seems to affect me greatly. Strange.
     
  5. bertiedog

    bertiedog Senior Member

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    Hi Daffodil, No I haven't really tried antiviral meds apart from Acyclovir once which didn't seem to agree with me if I remember. I don't think I persisted with it. Perhaps I will wait and see how things go and if I keep getting this throat problem I will contact Dr M again and see what she thinks.

    The Samento, Bandertol etc are supposed to have anti viral properties I believe.

    Pam
     
  6. 2manyhobbies

    2manyhobbies

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    Sue,

    Are you taking any methylfolate? I am sure it takes the activated folate for the B12 to work. If you are low in methylfolate it will impair a whole string of processes in the methylation reaction and make you feel pretty bad.

    I was doing injections of methylcobalamin when I had active LD and it needs to be protected from light or it will lose potency.

    A pretty good indication would be your homocysteine levels 6 micromoles per liter is excellent. Metalothionine is produced in a healthy methylation process and is key to eliminating heavy metals.
     
  7. Daffodil

    Daffodil Senior Member

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    thanks 2many. I am afraid my brain is much too foggy to understand most of this stuff right now....is there some blood tests you could recommend? did you overcome lyme disease?

    now I wonder if the effect of samento on me (sleepiness, increased fog, etc) might be a result of its lowering blood pressure and not herxheimer...but I am only on 1/4th drop..

    very hard to make sense of whats what in this state!
    xoxo
     
  8. Vitalic

    Vitalic Senior Member

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    At what point did you decide to use herbal interventions as opposed to oral/intravenous antibiotics? Is it something you can do simultaneously? Just about to start treament for late stage Lyme so I want to make sure I'm attacking it with the full arsenal :)
     
  9. Daffodil

    Daffodil Senior Member

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    hi vitalic. i think dr. burrascano says doing IV first is better but it was not possible for me. i am just doing what my doctor tells me to do. he might have put me on orals first because he knows i could not do IV at that time, or maybe that is how he treats this; i am not sure.
    hopefully, someone else can chime in
     
  10. Spiderbaby

    Spiderbaby

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    Hi All,

    Just want to add my two cents to this thread, find peoples responses to talking the various herbal tinctures interesting in light of my own situation.
    Seeing KDM, was on oral anti-bios for 18 months with no real progress, so he has shifted me onto, I suppose his take on the Cowden Lyme protocol, namely alternating between Samento, Banderol and Cumanda.
    Personally Iam a about a month into the protocol, started of with Samento and ramped it up varly quickly without much adverse effects (swollen gland on left side of neck aside). In the process of upping the daily dose of Banderol, again without much if any side effects, apart from the usual daily symptoms.
    For me IV with KDM isnt an option, so going to give this protocol a go for a while, if there no progress may consider going to BCA to get IV therapy.
     
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  11. kskiska

    kskiska

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    I'm pretty new to all this but saw this thread after searching Banderol. Since I am super sensitive and reactive to everything, I started Banderol at 1/8th of a drop and can def feel it (increased brain fog, eye fuzziness, etc).

    At this rate how often to increase? Or only increase when the worsening subsides? It must take months to get up to 5 or more drops.
     
  12. RML

    RML Senior Member

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    Hi, sorry if I am gate crashing Daffodil's thread, but I had some questions about the Cowden Protocol and didn't want to make another thread on same topic.

    A week or two ago, I went to a Nutramedix workshop all about Cowden Herbal Protocol, this also offered a discounted rate for buying so I need to decide soon. It was very interesting and lots of lectures and info on Lyme disease and research studies etc. But somehow I seemed to tune out at the important parts about the actual protocol and how and when to take etc. (it was 4 or 5 hours long - I'm not doing so bad now, but still by the end, I was struggling)

    Anyway, my main question would be can I take these herbals alongside oral abx? One of the speakers there, suggested no, best not to. But I am sure I have read here and on many Fb pages that people have done both together. I guess part of me doesn't feel comfortable going it alone , and not following my own doctor's protocol.
    Should I continue with his abx and still start herbals? Or wait it out a little longer?

    Also, 9 months seems a little long to sign up for, good discount deal or not! I am not sure if I need to order the full protocol or just pick and choose certain products I feel best for me. I also worry they may not agree with me, then I have a full stash of stuff of no use.

    And since I don't have Bartonella, do I just skip those weeks/products and go on with the rest?

    Thanks in advance!
     
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  13. Dufresne

    Dufresne almost there...

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    Herbalist, Stephen Buhner has stated ABX and herbs go well together. This is the kind of latitude I like to see. I tend to trust those with experience who don't strictly adhere to an ideology.

    Sapi's study of Samento, Banderol, and doxycycline is an interesting one. The herbs outperformed doxy in that they were effective and didn't lead to a greater number of cystic forms. However I believe there's an intracellular form that is even more problematic in Chronic Lyme, and doxy or minocycline might be the only way of combatting it. If I had a reasonably well functioning immune system these are the therapeutics I'd be playing around with.
     
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  14. bertiedog

    bertiedog Senior Member

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    I have been on Cowden since 31 August last year and my energy and sense of wellbeing have massively improved. Looking back at my dairy I started to improve energywise at the end of last October.

    Whereas I used to do around 5000 steps or less at the start of the protocol now I can do 10000 and not feel ill but I don't do that everyday but usually well over 8000. However I had to stop the Samento because it gave me such bad migraines (its a vasodilator as is Cats Claw and Japanese Knotweed which I was also taking last year).

    My main problem however is still very bad migraines/headaches which I suffer with at times almost daily. It is possible they are not connected to the protocol but to the fact that my adrenals are so bad that I have to take 5.5mg Prednisolone daily and what I have found is that my blood sugars drop to a low overnight to around 3.8 - 4 which I think triggers these heads. I know those readings are normal but I don't think my brain agrees with this!

    My immune system is changing too. I have just had my 3rd virus in 6 weeks that have inflammed my sinuses something I don't think I have ever suffered with before. They have been quite painful but not made me feel ill and I get over the cold type virus pretty quickly. This is new for me.

    Have just had blood tests back from my GP and still my lymphocytes are low and below the reference range and this possibly also showed up when last year my CD57 cells were only around 62. I did show high levels of many of the Herpes viruses and Coxsackie but so far it doesn't really look like my immune system has been able to get very much stronger yet.

    I hadn't realised how well I am compared to last year until I read my daily diary and was quite shocked how bad I was when I first started the protocol. I will definitely continue for probably another year, after all I haven't been really well since 1979.

    If I could get a handle on these migraines I would be doing really great.

    Pam
     
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  15. Daffodil

    Daffodil Senior Member

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    hi @bertiedog . i think neuro symptoms improve last..that is what i read on a lyme message board. maybe you just need to wait it out.

    glad you are improving :)
    xo
     
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  16. Daffodil

    Daffodil Senior Member

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    @kskiska ...i am also the same...herbals are too strong for me...so my doc keeps me on regular antibiotics.
     
  17. Alea Ishikawa

    Alea Ishikawa

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    @Daffodil @Dufresne - Some folks on MDJunction reported Cowden said not to combine his protocol with antibiotics. I think Buhner's might be safe to do with abx.

    I have heard good about Buhner, Zhang, Byron White, and Cowden. Knowing what I know, I'd probably go with Cowden Condensed.



    @bertiedog - Though I don't know about your situation exactly, I've heard steroids like prednisone/prednisolone are not good to use when you have Lyme. Do you have intense allergies?

    I tend to get migraines if I go over my energy envelope. Would taking it easier and keeping relatively cool in the summer help you? I've also heard fish oil can help with headaches, but some people have adverse reactions. I'm also wondering if a lower dose of the herbals would help?
     
  18. adreno

    adreno PR activist

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    Samento (cat's claw) shifts the immune response towards TH2. This might make you more susceptible to viruses. The same goes for knotweed (and perhaps other herbals you are taking).
     
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  19. bertiedog

    bertiedog Senior Member

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    @adreno I haven't taken the JK or Samento or Cats Claw since the end of last year when I found out they were potent vasodilators. Of course, Banderol, Cumanda, Houttuynia, Mora all have an influcence on the immune system. Glad to say the cold was very mild and has virtually gone and sinuses much less painful.

    Pam
     
  20. bertiedog

    bertiedog Senior Member

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    @Alea Ishikawa I have to take 5.5mg Prednisolone daily because of virtual adrenal insufficiency, without it I would be dead! Taking it easy doesn't make much difference to the migraines they are much more connected to the blood sugar issue overnight.

    Thankfully acupuncture helps and I really need to schedule it pretty regularly to keep them under control. Looking back at my diary I can see that I had started to improve from the end of October energy-wise and many days I feel really well with loads of energy. It would feel horrible to sit around doing very little after so many years of being unable to do physical things so that isn't an option I would choose.

    Pam
     
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