Tansy - samento

Discussion in 'Fibromyalgia Main Forum' started by rebeccavw, Oct 25, 2005.

  1. rebeccavw

    rebeccavw New Member

    Hi Tansy

    I started on Samento a few weeks ago. How long did it take before you saw any improvement in symptoms and did it make you feel worse before it made you feel better ? I still feel terrible unless I do absolutely nothing and am desperately trying to stay working and not take any time off.

    I have ordered some recup aswell after going on the CFS experimental group. Has this helped you ?

    Thanks Rebecca
  2. tansy

    tansy New Member

    Hi Rebecca

    Samento made me feel a lot worse before it made me feel better, I had true herxing with samento. Herxing on samento is how it is for many of us, though a few lucky ones get to just improve over time.

    I found it Samento's effect too strong and stupidly tried to wait out the herxing. Finally I had no option but to stop and started the samento again on a very low dose whilst concentrated on the reasons I felt were making it so difficult for my body to cope with the die off.

    Now I am on 19 drops twice a day, the higher the dose I can tolerate the better it seems to work for me.

    Recup is clearly a worthwhile Tx for many with FM and ME/CFS. Rebalancing the ion channelopathy made sense to me; Recup has proved a useful adjunct to my protocol. I still only need one sachet a day, it's expensive so I'm pleased this lower dose suits me better than the two sachets often recommended. Everyone seems to have their own ideal dose. As with the samento it's best to start on a low dose then increase it slowly.

    love, Tansy
  3. rebeccavw

    rebeccavw New Member

    Thanks Tansy.

    When you say herx did it make your fatigue/flu like symptoms worse ? AW said that main side effect is diaorreah but i dont get that. I can never tell if something is herx or just yet another relapse.

    Also I dont quite understand why AW thinks there is there connection between borrelia and CFS. Isn't lyme disease something found in mainly USA. I did start with illness after a trip to pakistan 7 years ago but they dont have lyme disease there. I cant quite work it out but am willing to try anything !

    Thanks
    Rebecca x
  4. tansy

    tansy New Member

    Hi Rebecca

    AW is finding borellia in the blood of most of his patients, he deliberately avoids using the term lyme disease, and instead calls it chronic borreliosis. He believes this borellia is a major player in ME and CFS, but he also recognises other chronic/stealth infections can be involved.

    AW recommends reading William Harvey’s papers on the differences between acute lyme disease and chronic borreliosis. Borrelia can remain in the body and the patient be relatively asymptomatic until a situation arises which means the IS is no longer able to hold it in check. Borrelia can also affect changes in the host to ensure it’s own survival: this includes the immune response.

    Only a small % get diarrhoea as a side effect from samento.

    As for my herxing, I was totally caught out because it was nothing like I’d expected. Instead of feeling wiped out in a fluish way as I expected, I got a weird kind of energy accompanied by shakiness which also made my sleep med redundant. However my limbs became very weak and heavy in a flu like way. My OI, dizziness, and more, got a lot worse. I had a lot of pain during the first herx though thankfully not so much after that. I experienced new symptoms I’d not had before, an exacerbation of current symptoms, and even a replay of some symptoms that occurred in the early years of my illness which I thought had gone for good until I started herxing from the die off.

    For me this was not like anything I’d experienced before through other treatments, flare ups, or relapses, this made it easy to recognise. Herxing also started a lot earlier, and on a lower dose, than I had expected.

    Love, Tansy[This Message was Edited on 10/25/2005]