Cures and Red Flags

Discussion in 'Fibromyalgia Main Forum' started by tansy, Jul 17, 2006.

  1. tansy

    tansy New Member

    I am not able to use the computer much but I have been able to read posts here and on other boards occasionally. The little time I have been spending on the computer (which is still not working well) has had to be used for research and campaigning, like many UKers I want the current Parliamentary (Gibson) Enquiry to go well.

    It’s only natural for those who have gone into remission to want everyone else to benefit from what’s helped them. When posted on boards like this they must expect to be challenged, asked questions, and for anything they write about to be debated openly. Only by doing this can we all learn, it enables us to make informed choices and so opt for whatever protocols we think are most likely to help each of us.

    Anyone who posts about cures should not take challenges to their beliefs personally; in most cases it’s their hypotheses that are being challenged not personal attacks. When advice is given which others think could have adverse effects, posters should take these warnings as they are intended and not feel offended by them.

    Those of us who have been ill a long time, and have seen cures for these DDs touted for decades, will read any such claims with a healthy cynicism.

    When members go into remission, or get a marked improvement in their quality of life, we are all delighted.

    Posts that claim 100% successes, or that any failures are somehow the fault of the patient/client, will lead to red flags will going up.

    Protocols based purely on changing how we think can be as potentially damaging to the individual as the graded exercise programmes being forced on PWME/CFS in the UK.

    Failures in mind-body techniques can undermine the client’s self esteem, confidence, and has the potential to destroy his/her coping mechanisms. Another reason they can fail is clients are told they have improved sufficiently to increase their activity levels; very often the relapse from following those instructions lead to more severe symptoms than were experienced before.

    Talking about red flags: my acupuncturist and I have parted company. I think the reasons for this are relevant to everyone here. He has changed in recent years, I have no doubt this suits him, but it has been to the detriment of some of his clients, myself included.

    I was trying out some simple tai chi, y dan, and qi gong stretches, at the same time was I seeing a physical therapist for my cervical spine and arm problems. My acupuncturist insisted I drop the PT for my arms and use a movement he recommended because he knew what was going on and the PT didn’t. His recommendation was disastrous but he would not accept this.

    Then he went on a mission to cure me so he used treatments that were too strong, and things went pear shaped. In the past he would correct any over treatment but not this time. Why? Because he, and only he, knew what was really going wrong. His treatments contributed to the severity of my problems last winter.

    Lastly the dietary advice he gave me was the complete opposite to what works for me.

    So for my last appointment with him I asked him to calm things down, his comment when told what had happened to me, was “that doesn’t sound good”. Bit of an understatement that! To give him due credit this last treatment did help to settle down the problems his prior treatments had caused. Not surprisingly I was not willing to risk any more from him.

    So there you have it, a health professional who knew it all, but whose treatments just made matters worse. I think the saying “buyer beware” it particularly relevant here.


    A quick update. I had some very serious health issues last winter, they were caused by too many factors coming all at once. Despite that serious episode and some hiccups since then, I continue to make progress and get over the set backs sooner. Like many I have a classic cycling of many symptoms. A 2 week course of ABx brought about a distinct herx, indicating the beasties are still around even though their numbers appear to have been reduced.

    Please keep researching, asking questions, debating, and posting on anything you think might help others here and on other similar boards. Never stop searching, weigh up the potential risk v benefits, and be prepared for some trial and error. A lot more is known now, protocols are being refined and improved upon all the time, and there’s a lot you can do to help yourself.


    Thanks for staying the course and providing so much info and support for everyone here. Our protocols and diets may differ but they share many similarities too.

    Take care everyone
    Tansy[This Message was Edited on 07/17/2006]
  2. Rosiebud

    Rosiebud New Member

    its wonderful to hear from you again and with your usual great advice.

    I'm sorry you've been having such a rough time and I hope things continue to pick up for you.

    Missed you a lot.

  3. springrose22

    springrose22 New Member

    So, who wrote this, Stormy or Tansy? As you say, chanaging the way we think and forcing graded exercise on us can be potentially damaging. We must be ever vigilant for those professionals, who just decide that they know how to fix us without really knowing how. Take care. Get better. Marie
  4. suz9601

    suz9601 Member

    We have missed you so much around here Tansy. I do wish you well and hope you will continue to improve. Thanks for sharing all your knowledge around here.

    Take care,
  5. rockyjs

    rockyjs Member

    Tansy, it's so good to see your name again and get an update. I have been making slow but definite progress with Saventaro (same as Samento but I tolerate it better in the capsule form). It has really helped with cognitive problems caused by West Nile and possibly lyme.

    I appreciate your comments, especially the point that mind-body techniques can backfire if not handled properly. I've had the same experience with diet, supplements, PT, etc. I had been doing very well with spine issues until my chiropractor wanted to try a new technique for opening the disc space between a couple of vertebrae...I had a huge immune response and have been sick for a week because of it. I should have known better - the fact that no one else reacted that way is no guarantee for me!

    Good luck with the political efforts and hope to see more of your posts in the future -

  6. colinjn

    colinjn New Member

    HI Tansy,
    Your experience mirrors mine, in the theme if not in the details.
    I found that people around me were supportive if I was continuing to fight and experiment ( thousands of dollars worth), but would turn on me if I just " gave up, gave in and rested". Our society seems to honour only those stories about overcoming and conquering. The stories of coping and going with the flow, and adapting are threatening to the well.

    Of course I have to struggle with the same mindset. Part of it is going through the stages of grief. Part of it is gaining a new wisdom.

    As you said, we celebrate the release of pain and fatigue from the lives of fellow sufferers. But we also have learned that each person must follow an inner guidance to relief and develope an acceptance of the limitations in our lives. This seems to be one of the biggest gifts of this disease. A building of self confidence.

    Thanks again,
  7. Mikie

    Mikie Moderator

    Great to hear from you. Sounds like you are very busy but I'm glad you took the time to update us. With ME/CFIDS, it seems as though our progress is so sloooooow that we often have to look back a long way to see just how far we have come. I'm glad the ABX killed off some beasties. I don't think we can heal with them running around inside of us.

    Take care. I keep you in my prayers.

    Love, Mikie
  8. pam_d

    pam_d New Member

    And good to see your name here again!

    I think it's always a good reminder for all of us that one solution or protocol does not work for everyone....I always wince a little when I see any one thing being pushed a lot here...while it may have worked wonders for some members (and may even be the kind of thing that wouldn't "hurt" to try even if it didn't provide miraculous results) it will likely not be a cure for everyone, and often doesn't take into consideration the various states of illness, concurrent problems besides FM/CFS (everything from diabetes to food allergies to drug reactions---we are all such individuals, often juggling a lot more than just FM/CFS).

    When something works for us, we become cheerleaders for it---and that's only natural! We want to share what worked in the hopes that someone else can feel as good as we do. But I think it's always wise to share it by saying "this is what worked well for ME---you might want to check this out". In fact, I usually try to say "you might want to check out this website and read up on it" rather than even "you might want to try it"...

    The two things that have worked for me to make a 80-90% improvement in my FM are very different----doing NAET (natural allergy therapy) and going back to work!! Can you imagine the reaction if I started promoting going back to work as a cure for FM?? No, instead, I've written posts explaining that this approach seemed to work for ME, having such a positive effect on my mental and eventually physical health---and only when posts discuss "returning to work" as a topic----that working certainly is NOT for everyone, and in fact, caring for one's FM/CFS health is often a fulltime job in itself.

    So, anyway, Tansy, I enjoyed your post and it's timely reminders that everyone's "cure" or road to better health will be a slightly different one. And I'm also glad to hear you are doing better now----please stick around! And you are right----you can never learn enough!

  9. bct

    bct Well-Known Member

    I was so glad to see your post, and to hear that you are doing alright.

    I use your past posts as research pointers all the time.

    I hope you and your computer continue to improve! I can't begin to tell you how much I appreciate all the time and effort you have given to this board, and I know everyone else here feels the same.

    Best Wishes,

  10. Zzzsharn

    Zzzsharn New Member

    Well put.

  11. tansy

    tansy New Member

    I’m not sure how often I will be posting, so please don’t be offended if I don’t reply to posts etc. Thanks for welcoming me back and all the nice comments.

    The time I can physically use my computer is very limited; a new and reliable computer would help but I cannot afford to replace it just now. My GP realises my computer is one of my lifelines so he contacted social services who just recommended a web site for information. Oh well.

    Jan, I am sorry to hear about the inflammation following chiro; I’ve had this problem in the past. I hope it goes away soon. Good to hear the Saventaro is still helping; I’m on the Cowden protocol and continue to make progress. I get very concerned when I read people are being told that without ABx they cannot improve substantially or recover, because PWLD have done well on protocols without ABx. I suggest anyone who cannot, or does not want to, take high dose ABx long term read Stephen Buhner’s book “Healing Lyme” and do some research on the Internet.

    TC, Tansy
  12. tansy

    tansy New Member

    for taking the time to help me get my head around those problems, my brain was not working at all well when things went badly wrong, too little O2 and too much inflammation. The consequences were serious which just goes to show how careful we must be, I now have a better understanding as to why it made matters so much worse.

    My GP was shocked I did not ring the UK's equivalent of 911, until I explained why. He arranged for a method by which I can ensure allergic and adverse reactions to meds, and contraindications, could be made known should there be another medical emergency. This method means if ignored the hospital/medical staff would be held legally responsible should they not take the info provided seriously. It's a local scheme.

    Dr Betty Dowsett has advised PWME in the UK, because of the way things stand here now, they are better off trying to help themselves. Looking back on it I still believe self treating was the best option for me.

    The Cowden protocol seems to have moved me on from the plateau I'd reached on just samento. I'm doing other things too which are also helping.

    How are you doing?

    Take care,
    Tansy[This Message was Edited on 07/24/2006]
  13. razorqueen

    razorqueen Member

    you have been missed.

  14. 1sweetie

    1sweetie New Member

    Your post was much needed and appreciated. You lend so much wisdom to us and I appreciate that you took your time to visit us.

    I wish for you better health and always know that we need you and appreciate you.

    Ever since I was a member and when I just visited, you were the one I respected and I must add Mikie to that list with you. I was happy to see your name tonight. The board has needed your guidance lately and I understand that you can't be with us always, but please stop by when you are able.

  15. mrpain

    mrpain New Member

    I don't know you as well as the others seem to do but I can sure understand why they love you. It's a honor to have read what you wrote and it is very impressive. If I wasn't so brainfog I would try to say something impressive back to you but all I can do is just sit back and admire..
    Take care!

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