To Everyone With Lyme Disease

Discussion in 'Fibromyalgia Main Forum' started by Mikie, Feb 20, 2006.

  1. Mikie

    Mikie Moderator

    I haven't read the negative posts regarding Lyme Disease here but I understand that several people are upset. I don't want this thread to turn into something stressful for anyone so I am asking everyone to please refrain from reiterating anything unpleasant here.

    My purpose is to state that I always have believed that discussing Lyme Disease is appropriate on this board just as is discussing Gulf War Illness or any other condition which is a fatigue illness. There may be many with CFIDS who have undiagnosed Lyme Disease and our members need to be aware of it as a possible cuase of their illnesses.

    I do know that many with Lyme had a very difficult getting a diagnoses. It is important that we have info on this illness here so that anyone who needs to get a diagnosis will have good info at his or her hands. That's where our members come in. We have some of the kindest and most generous members anywhere on the web.

    I am asking that our members treat one another with respect. We do not have to read nor respond to any post on any subject unless we choose to. There is room to discuss any theory, treatment, and/or illness here. We don't necessarily need to agree, but please, let's be careful of others' feelings.

    Thank you.

    Love, Mikie
  2. Cromwell

    Cromwell New Member

    coMORBID CONDITIONS EXIST. People even with OT can expect and get help. Guess what? that help for something OT, will make the FM not so hard to handle. Where else and who else do we have?

    I love your response, let us be tolerant and have peace and love.

    I think the thread was really not as bad as some saw it to be-you know how touchy we all can be. I love different opinions, it is what makes change possible.

    Love to all, and I agree, time to drop this and let people post in a friendly, informative way on anything that may be related, or have value. Heck, the jokes are great too. It is not as if we run out of board space. Love to all, (LOL) we Brits are actually called Limies you know,(after the fruit) even though the disease is not in UK (I don't think)
    it is interesting how similar it is to FM.

    Love Anne C
  3. victoria

    victoria New Member

    I totally agree!

    all the best,
    Victoria
  4. Lolalee

    Lolalee New Member

    Great Post!!! Well Said!!!

    It is a pity that we are so sensitive. I find that at times it is difficult to communicate via the written word. Words that are written in disagreement sometimes sound harsh. It is important not to take things personally......especially if it is not a thread that you have started or contributed to.

    When I read something that bothers me, I just go on. Why be contrary or pick a fight? What does that serve? Besides, the Message Board Rules forbid it.

    We are here to SUPPORT each other. That is why I continue to come to this board....for support, information, comraderie, smiles, compassion, help and all the other positive things I can't get elsewhere.

    If we must disagree, then let's disagree without being disagreeable.

    Blessings, Lolalee
    [This Message was Edited on 02/20/2006]
  5. ilovecats94

    ilovecats94 New Member

    Carlene and Mikie,
    I totally agree with both of you.

    Also, Carlene, I do go by if you can't say anything nice, than say nothing, and I have been quite happy I have always said that to myself before I posted something I would be sorry for.

    Love,
    Faye

  6. sues1

    sues1 New Member

    I spend quite a bit of time on this board and it benefits me greatly. But I still do not have enough time to read all or respond to all. Sometimes I come on and just quickly read the ones that seems to fit me or ones I might be able to help with.

    If I see "Can you take aspirin when Pregnant" ?(I am in my 60s) OR "Does Supplement XX help you with your Lyme" ? (I do not have Lyme so I would not know). Etc.......

    Once in a while I will even read those, but not all the time. Yet I am interested in Lyme and I care for the ones with it. All with Lyme has been so gracious, kind and sharing........I like to do so where I can. We both have a disease/illness/snydrome (whatever) that is hard to diagoised and we share many of the same problems.

    We also share hope, love for one another and a family feeling here. I think we need each other....at least I need you as you listen to me and care also. I try where I can help, but I can not in some cases at all.

    Blessings to all........gentle Hugs.......Love, Susan
  7. Mikie

    Mikie Moderator

    I hope it will help those with Lyme Disease to know that they have support here. Funny thing is that some years back, we had a somewhat similar situation between those with FMS only and those with CFIDS only. Each thought the other was getting more emphasis. My body is an equal opportunity body and so I have both :) It seems silly now, looking back, that this ever came up here just as it will seem silly, in retrospect, that this Lyme issue is causing division. The thing is that people really do get their feelings hurt and we don't need that. We already have enough strife in the world today; let's keep this a peaceful haven for our members.

    Carlene, I was surprised to see the title in bold. Please, feel free to do that if you think more people will read and heed it. Thanks. I hope you are doing well.

    Love, Mikie
  8. lilbird

    lilbird New Member

    I am one of those Lymeies. I had no idea that there was any negative feeling about posting about Lyme.

    I have only posted in an attempt to help others. This only goes to show you the extent of the controversy over lyme.

    thanks again for a post well said,
    Cathy
  9. neen85

    neen85 New Member

    As one of the first people on the board to come forward and announce that I had lyme disease (see "CFS Shocker:Misdiagnosed 16 1/2 years")I actually "sat" on that info. for quite a while wondering how it would be accepted on the board. Luckily I was accepted with open arms,and more CFS shocker posts followed.

    I just wished I had a board to go to where I could have been informed about all the possibilities that could be causes of fatigue way back when I first became ill (before the PC age),so I would not have wasted the best years of my life sleeping it away,facing the possibility of it being too late for me to have children if/when I ever do get things under controll. After years of being told "you have chronic fatigue,there is nothing that can be done",I about fell over when the "next" new doctor said "I think you might have lyme disease". Daneen
  10. hopeful4

    hopeful4 New Member

    Thank you Mikie for your voice of reason and compassion.

    If it had not been for this board, I would still be undiagnosed and untreated for Lyme, going from doctor to doctor and getting worse all the time.

    Now I wish to offer information and support to others here, as well as continuing to learn and be supported.

    Thanks for your words of wisdom that we have grown to count on.

    Blessings,
    Hopeful4
  11. minimonkey

    minimonkey New Member

    You guys are the greatest -- thank you for voicing this. I'm just newly dx'ed with Lyme, and was really feeling the heat of the recent posting frenzy. It was because of folks like firecop that I realized I had lyme, so I am so saddened to see those folks leave.

    We're all in this together!!!!!
  12. justlooking

    justlooking New Member

    I love to read the Lyme posts, I find them very interesting and informative, HOWEVER you have to read them quickly if you don't want to get stressed, because the responses often become ugly and antagonistic.

    It seems to be one of those subjects that tend to get heated and unnecessarily stressful.

    I hope people will listen to your voice of reason!! Even though you are no longer moderating, we all respect you and your advice!!!

    Sincerely
    JL
    [This Message was Edited on 02/21/2006]
  13. ldbgcoleman

    ldbgcoleman New Member

    but I do want to say that even though some of us feel like we know each other the person answewring your post really doesn't know you so try not to take it personally.

    Also there is not tone of voice or facial expression with a post so it may come off harshly unintentially. Try to give the person the benifit of the doubt.

    Each opf us has to make the choices that are right for us. Noone else can do that for us.

    Mikie you are appreciated more thank you'll ever know! Lynn
  14. wildwoodlane

    wildwoodlane Member

    I hear this mentioned so much -- I thought to have Lyme disease you had to be bitten by a tick. Is this correct? And why is it that so many people with FMS or CFS or CF/IDS also are diagnosed with Lyme disease? What test is done to determine that you have it? I spent time up in Wisconsin with my late husband and heard a lot about Lyme disease when we visited there but very rarely hear it mentioned here in the Sunflower State. Thanks to anyone with answers for me.

    wildwoodlane
  15. springrose22

    springrose22 New Member

    I'm very sick and often can hardly sit at the computer. I don't really think I have Lyme Disease, but it certainly never occurred to me that those who do don't belong on this board. I have been tested, don't have the results yet, but I really think these diseases are all related in many ways: they can all be very debilitating and difficult to cure.

    The point is, the more we stick together and share information, the sooner we will find ways to help ourselves, and eventually, hopefully sooner rather than later, someone will develop ways to help us all no matter what our ailments are. Love and peace to all. Marie
  16. Mikie

    Mikie Moderator

    That Lyme Disease is way underdiagnosed in those with fatigue illnesses. When I was growing up in CO, we had to be concerned with Rocky Mountain Tick Fever. My friends and I had "Tick Shots" every year because we all hiked in the foothills at the base of the Rockies in our town. Our families had picnics in the mountains too. We often had ticks in our backyards. My dog was bit and he was paralyzed for some time, even after the tick was removed. No one knows for sure what complications lay down the road for anyone with tick fever. I do know that when active, it made people very sick.

    My guess is that Lyme Disease is a risk in far more areas than previously thought. I have to wonder whether it can be transmitted from one person to another. It's a very tricky pathogen.

    I believe that what I really have is Gulf War Illness and I never served in the military. I did, however, live right next to a military facility where soldiers were receiving many vaccines prior to being deployed to the first Gulf War. I believe I was infected with the mycoplasma infection, which triggered my illnesses, in the holiday shopping crowds, probably from a soldier who was actively sick.

    I'm lucky that my mycoplasmas showed up in a routine blood test taken while I was actively sick. Unfortunately, back then, no one knew that only a couple of cycles of ABX were insufficient to kill them. I was very sick, crippled for months, and was never the same.

    My point is that regardless of how we got sick, the info we have to share is invaluable. Many here are infected with Lyme and/or mycoplasmas. Had they not heard about it here, many would not have known to be tested and treated.

    Love, Mikie
  17. wildwoodlane

    wildwoodlane Member

    Thank you for answering my question. Don't think I have Lyme and am sorry your hubby is ill with it. Hope you can get some answers and help very soon.

    Again, thanks for your time in responding.

    wildwoodlane
  18. minimonkey

    minimonkey New Member

    A lot of folks who have lyme don't recall a tick bite or a rash-- the newer research shows that little, bitty ticks (the size of a period at the end of a sentence) can transmit lyme, and there is no clear evidence that they need to stay on the body for a certain length of time to transmit it -- the mingling of tick and human fluids begins as soon as the tick attaches to you!

  19. Mikie

    Mikie Moderator

  20. maps

    maps New Member

    I have only been on this board a few weeks. I have CFS and a mycoplasma infection.

    Thanks to this boards discussions on lyme I will now check with my dr to see if I was tested.

    A lot of people think that CFS includes many infections. I have been surfing the web for years, I was actually the one who told my doctor I thought I had CFS, but nowhere else have I read anything about Lime.

    Please keep posting any infections you may have as I, probably like many others, come here to get information from all.

    regards

    maps