Tansy - help!

Discussion in 'Fibromyalgia Main Forum' started by Bunchy, Oct 4, 2005.

  1. Bunchy

    Bunchy New Member

    Dear Tansy,

    I know you are very well informed and are also in the UK like me so I thought you may be able to advise me.

    I had a consultation with Dr AW and he found borrelia like spirochaetes in my blood ( he said everyone tests positive so not sure about the validity of the test nor whether this is actually the cause of illness) and wants me to try Samento, Noni, Recuperat and low dose Naltrexone. I have read on this board for ages and see some people rubbishing these treatments whilst those who try them don't seem to get very far. Which, in your opinion is worth a try and why? My cortisol/DHEA and heavy metals were all entirely within normal ranges.

    You can see my illness history if you go to my profile and read the post "please help me" which I wtrote on 17/01/05.

    I clearly do not have a "normal CFS/ME/FM/Lyme illness but everything else has been ruled out.

    What do you think?

    Thanks in advance for your help,

    Bunchy x
  2. Bunchy

    Bunchy New Member

    bumping for a response please
  3. tansy

    tansy New Member

    and samento, noni and Rucuperat-ion have been part of that, I guess my reply will be a little biased in their favour.

    Having checked out the thread you quote here I see others felt borreliosis/lyme a strong possibility. The only way to be sure IMHO is to treat it, in most cases herxing will occur, in others there will be an improvement but it will take some time. Barty’s report on how well he has done is by no means a rare event, the longer we have been ill, the longer it will take.

    I soon discovered how sensitive I am to samento and allowed myself to herx too hard and long, so I took a break, adjusted my own protocol, and now can tolerate the samento on much higher doses.

    Noni helps me. AW’s starting dose for noni was too high for me, and for many others, so I restarted that on one drop a day. So if you decide to try the noni start on just one drop a day, increase your dose according to how things go, and use that for a while before starting the samento.

    Lee Cowden has revised his protocol with a greater emphasis on detoxing. Instead of the noni, or as well; burbur and cumanda are used.

    I have not taken low dose naltrexone so no personal feedback. Like so many Tx it can work very well, or cause too many side effects. There’s an impressive % of success in FM, for ME/CFS it’s seems to be lower and may be problematic. However some PWCs have found LDN to be one of their most successful Rxes for relief from some of their symptoms. LDN can help with mood, pain, energy, and sleep. If some of your symptoms suggest low levels of endorphins then LDN should help.

    Recuperat-ion is proving successful for many with these DDs; me included. Rebalancing the ion channelopathy has meant improvements in quite a few areas, and seems to be working well alongside other things I’m doing. The ideal Recup dose seems to be very individual, also when and how often we take it. Half the recommended dose works well for me, split into two doses ie half a sachet twice a day. AW is recommending Recup to many of his patients because he started to get lots of good feedback on it.

    Everyone is noticing the differences now. Those who did not know me before I became ill say they have never seen me looking this well. There is a growing list of symptoms and problems that are either improving now, or which seem to have resolved. However, it took a lot more than treating the borreliosis in my case and that’s how it will continue for some time.

    There’s no quick fix and as yet no single explanation or solution. Sometimes we just have to weigh up the pros and risks, and dip our toes in on a try it and see basis. A few Tx backfired on me, including samento at one stage, but that turned out to be a good thing in the long run since it led to finding some important stuff I’d missed. Unfortunately trial and error was often the means through which I discovered what I personally needed to pursue.

    Bunchy you will never find consensus on this board; I know this can make it seem overwhelming at times because I have there myself. I am just pleased I did not allow myself to be persuaded by a few others who need everyone to accept without question what they were doing was right for the rest of us; especially those who resort to scare mongering. Slow and steady seems to work best for a high % of us, samento can reduce borrelia numbers and treat other chronic infections too.

    Good luck whatever you decide.

    love, Tansy
  4. Bunchy

    Bunchy New Member

    Thank you so much for your feedback. BTW what does Tx mean?

    What doses of Noni and Samento and Recup should I take? AW said two sachets of Recup but I can't afford that and also the other two are very expensive and I don't know what doses to start with and whether I should take breaks etc.

    Hearing you used Zopiclone I have to say that I have been on Zop long-term and it has totally lost its effect for me unless I take about three large pills. I also take far too much Diazepam for pain relief at times and silly amounts of Zolpidem when I need to get to sleep quickly at a reasonable time. I take so much I sometimes feel like a drug addict yet cutting down is hell. I only get to sleep at about 4am, sleep restlessly and unrefreshingly then struggle to wake at around midday feeling like I am coming round from an anaesthetic. What do you do when the drugs don't work anymore and you can't sleep on even high doses let alone stop taking them???


    Thanks again,

    Love Bunchy x
    [This Message was Edited on 10/06/2005]
  5. Bunchy

    Bunchy New Member

    bumping once again for Tansy
  6. Bunchy

    Bunchy New Member

    One more bump for you Tansy :)
  7. tansy

    tansy New Member

    of Recup, noni and samento.

    Many of us have found AW’s dose recommendations too high, and whilst we accept herxing, or feeling worse for a while, is par for the course; we have had to go about things a lot slower.

    Two sachets a day of Recup is just the recommendation (not the rule) for the Blasi Protocol. Many who have the symptoms of ME/CFS find this dose too high. Most, whatever their Dx (diagnosis), start out on a much lower dose; a few find half a sachet a day works for them ie anymore is too much. I started on half a sachet a day, now take that twice a day; I do not need more than that atm, and if I try taking more I have problems. You will have to find you own ideal dose but please don’t take two full sachets to start with.

    When severely affected and/or long term it is often recommended the noni be used first. As I wrote before many found the recommended starting dose far too high as well, so I suggest you try with one or two drops a day and see how you go. After my initial experience on 4 drops bid (twice a day) I thought I was reacting to the noni or it did not suit me, due to problems with herxing I went back on noni at a very low dose, I’ve been on the full dose for a long time now. You can take the samento without the noni, but it noni help us tolerate the samento and it’s actions better.

    I check how much things are helping by taking a break from them every now and then, sometimes this is the only way to tell. It can also be important to accept the cycling of borreliosis symptoms and their severity, so I take that inot accout too.

    Below is advice on taking samento and the breaks that should be taken when taking it for chronic borreliosis. There are some yahoo groups where those taking samento post and who can support you and answer any questions you have. I really valued support, info, feedback and shared experiences especially in the early months of taking samento. There is some feedback here too.

    I have been taking samento and noni, with a few breaks, for almost a year; the Recup for some months now. So far it has not cost me the amount you quoted. My first bottles of samento and noni lasted a long time since I could only tolerate low doses of each. I bought my Recup from Spain, I started taking it before speaking to AW; you might want to check out the cost differences. Have you heard about superloop? This enables us to get a discount on products through the Nutricentre; some buy their samento this way.

    Yes there have been times when the Zopiclone did not work as well, but for the last few weeks 7.5mgs x 2 is working, the best it has since I first started taking zopiclone.

    Much seems to depend upon what else is going on health wise. I was on 7.5 mg until severe herxing made the zopliclone redundant, then my GP finally agreed to increase the dose. Having had years of chronic profound insomnia I learned to relax both my brain and body as much as I could when sleep totally eluded me, but it’s not easy I know.

    Teitelbaum writes about using smaller dose of a wider range of agents to help address sleep problems, you may find that approach works better. I found both baclofen and NSAIDS could make the Zopiclone more effective but nothing was ever guaranteed.

    Love, Tansy

    Samento

    It is important to understand the optimum dose varies from one person to another, and the optimum dose is likely to change over the course of treatment.

    Don't take Samento at the same time as other herbals (keep them 30 minutes apart).

    Take on an empty stomach in plenty of water 30 minutes before food

    Avoid it if in the first and last trimester of pregnancy

    All doses in to be taken in a glass to a pint of clean cold water (not hot as this evaporates the alcohol base lessening the bioavailability - although anyone worried about ethanol sensitivities/allergies could use this method - the alcohol content is minimal) and allow to dissolve for 30 seconds.

    a) Day 1 - 3 one drop a.m.
    b) Day 4 - 6 one drop b.i.d. (a.m and p.m).
    c) Day 7 - 9 one drop t.i.d (a.m., lunchtime, and p.m.)
    d) Day 10 - 12 two drops t.i.d
    e) Day 13 - 15 three drops t.i.d
    f) Day 16 - 18 four drops t.i.d
    g) Day 19 - 21 five drops t.i.d
    h) Increase at that rate unless unwanted symptoms resume, then back off slightly. You may tolerate a higher dose. It may be much lower.

    If taken as a 'preventative' 1 to 3 drops daily in a glass of water should suffice.

    In the case of those who find that they can't tolerate 1 drop at the start put the one drop in a pint of water, drink 1/3 and throw the rest away. Build up slowly. Expect some symptoms of headache, nausea, dizziness at the
    start. This is normal and should pass in 24 to 48 hours. If this occurs, (generally described as 'flu-like symptoms and often called a 'herx' or Herxheimer Reaction) during dosing with Samento stop immediately until the symptoms pass and then restart either at the dose you stopped at or one to
    three drops less.

    When taken for borreliosis/lyme disease, and similar infections, breaks from samento are advised. Many Drs recommend 12½ days on samento, 1½ days off; samento can drive the borrelia into its cyst form so these breaks are said to allow the keets to think the coast is clear and come out from hiding. After 6 months take a break for 2 weeks. After a two week break a lower dose is recommended. Another alternative regarding breaks is to take a one week break every three months, again when resuming samento the restarting dose may need to be lower than the dose taken before these one or two week breaks.
  8. Bunchy

    Bunchy New Member

    Tansy,

    So kind of you to respond so fully. I have just put a post out to try to find out more about these approaches. Your input was much appreciated :)

    Love Bunchy x
  9. Bunchy

    Bunchy New Member

    Thanks for the translation...lol

    Love Bunchy x