Question ...

Discussion in 'Lyme Disease Archives' started by minimonkey, Jun 25, 2006.

  1. minimonkey

    minimonkey New Member

    Do you folks ever feel frustrated if you read the FM/CFS board? I do -- I want to scream at everyone that LYME can cause all those symptoms... (mycoplasma, too, for that matter.) I know it isn't appropriate to say that over there, but I just hate to see people suffer so much when it is possible that they could be treated for the cause, not just the symptoms....

    I don't mean to indicate that everyone with a chronic illness has Lyme, but sometimes the clinical picture just looks so clear to me...and I feel very sad.
  2. bct

    bct Active Member

    but as you know, there is so much mis-information and ignorance about Lyme, Myco., Bab., Erlich., etc., that it just gets downright discouraging and intimidating for a lot of people to take in (including me).

    Plus, most doctors seem clueless, and don't even want to go there (dx-ing Lyme).

    What mainly frustrates me on the FM/CFS board is the increasing traffic in cyber-trivia and OT posts that soon will consume the board!

    Best Wishes to you,
    Barry
  3. kellyann

    kellyann New Member

    I think most people with FM/CFS have Lyme too. They just don't know it yet.

    My doctor told me I tested possitive for mycoplasma, I don't know much about it though. Is is a virus?

    Take Care!
    Kellyann
  4. jarjar

    jarjar New Member

    I have posted SO MANY times when I hear people complain about lyme related symptoms that they think are FM or CFS.

    My doc like G sees nothing but Lyme patients and is well respected world wide in the lyme community. Every patient that has had a FM diagnosis that has walked thru his door has tested positive for Lyme with Igenex. Second most misdiagnosed case is CFS.

    I was on the marshall protocol with Sujay before a fellow CFS suffer said get a Igenex western blot. I did take it and bingo......at least it gave me direction..it gave me something to focus on and I know I am going in the right direction.

    It saddens me to see all the people looking for the next drug to mask their symptoms on the board.

    I agree with Barry also the board has gotten so off topic that I will keep my mouth shut as the moderators would want to delete what I would have to say.

    I'm glad you made this post minimonkey

    Jar

    [This Message was Edited on 06/25/2006]
  5. minimonkey

    minimonkey New Member

    Actually, there are a whole bunch of different mycoplasmas -- I don't know all that much about them, either. Some of them are basically harmless, others are very pathogenic. They are classified as "stealth pathogens" (meaning they can evade the immune system and are also difficult to diagnose), and as I understand it, they are essentially cell-wall deficient bacteria that behave a bit like bacteria, a bit like fungi, a bit like protozoa -- and often they co-exist with other diseases. Ticks can apparently transmit them, and there is a lot of evidence that they are also transmissible person to person, even casually. They are implicated as one of the main components of Gulf War Illness. There is at least one strain (mycoplasma fermentans) that is patented in a crystallized form by a member of the U.S. armed forces -- Army, I think.

    This strain was developed, as I understand it,partially from the brucella bacterium (something makes me think it was crossed with the Visna Virus, a sheep disease -- I'd need to double check that one, though...) Anyhow, it was patented as a biological warfare agent. If you are interested, you can google mycoplasma and Garth Nicolson -- he has done a lot of research on mycoplasma.

    The treatment of choice for most mycoplasmas, I think, is broad spectrum antibiotics, particularly doxycycline. The symptoms are very close to those of Lyme, and it is apparently just about as hard to eradicate -- requires long courses of abx to start getting well. According to some sources, just about everyone is infected with one or more of these strains......

    Hope that helps!
  6. kellyann

    kellyann New Member

    It never crossed my mind that I might have Lyme before I tested postive for it. But afterwards, I sat down and read a list of symptoms. It fit me perfectly. I almost cried. I feel like now I have something to work towards curing. With Fibromyalgia you are just told to live with it. That was not good enough for me. I wanted to know why I was so sick. And I did find out thanks to the FFC. I have Lyme disease.
    And now I am working hard at getting well. I wish that everyone with fibromyalgia would get tested for Lyme.


    Just my 2 cents!
    Kellyann
  7. victoria

    victoria New Member

    I wish those people who die with CF/FM listed as a 'contributing factor" could get full autopsies looking for lyme and other stealth pathogens, I think it would change the whole picture radically.

    One of our younger group-support members died suddenly after taking an abx for probable strep - autopsy is being done by crime lab, and results still aren't in 6 months later.

    But I doubt they'll go very far other than determining it wasn't homicide since it is a state crime lab. The family tried to get further testing done to see what was 'really' wrong with her, but from what I heard, the lab is intractable... don't think they're able to do much more on their own.

    I figure as long as I don't nag too much, just inserting suggestions here and there on the other board is very useful -- the more a person hears about the possibility, I think the more it comes to their attention, eventually.

    all thebest,
    Victoria

  8. kellyann

    kellyann New Member

    I just read a post from someone on the FM board about how their doctor told them to just accept that they have FM and to live with it! I read that person's bio, favorite things included: nature walks...hmmmmm, could it be they have Lyme disease? I left a very short post about Lyme, it will probably not be paid any attention.


    Oh well, I tried.
    Kellyann
    [This Message was Edited on 06/27/2006]
    [This Message was Edited on 06/27/2006]
  9. jarjar

    jarjar New Member

    Kelly and all, plug away and educate these people.....If you can change one patient it is all worth it...you have helped turn someones life around

    jar
  10. minimonkey

    minimonkey New Member

    It is because of the outspoken people on the fibro board that I ever started to consider lyme -- in fact, Firecop was the one who convinced me I should be tested -- thank GOODNESS I followed up on that! So, perhaps I am that "one" patient whose mind was changed by a few posts.

    Wouldn't it be great if they really DID do autopsies on the chronic-illness folks when they die? That might be enough to help pinpoint which underlying illnesses are causing all these symptoms... and help the rest of those suffering to find a cure.

    I'm afraid of saying too much over there on the fibro board, though -- don't want to get myself banned. I was never willing to accept that I had a "mystery" illness with no apparent cause, and that I would just have to live with it -- where there is illness, there is a cause for the illness, whether science has found it yet or not. Telling someone to accept that they just have to live with chronic pain, neurological symptoms, crushing fatigue, a shot immune system, etc. is cruel and unusual, in my opinion.
  11. vp

    vp New Member

    I found FFC through this site!!!!!(And my Lyme Diagnosis)

    I suspected Lyme 3 months on to my illness in 2004. My PCP tested me for it, but it came back negative so he said I couldn't possibly have it, even though I had most the symptoms. It took 2 years of specialists to diagnose me with fibro and CFS, and they told me to live with it, there's nothing that can be done.

    I went to FFC December of 2005 and was diagnosed with Lyme by the beginning of March.
    I'm on my way back to living again. Yeah!!!!!!!
  12. kellyann

    kellyann New Member

    Nobody is trying to persecute anyone here. We just wish more people would listen to us about Lyme disease. I think you must have misunderstood. I don't think anyone here is guilty of sniping. We were all happy to have our own message board, I had hoped we could speak a bit more freely here.

    Kellyann

  13. minimonkey

    minimonkey New Member

    I certainly didn't mean to sound persecutory about anyone -- I just hate to see people suffer when maybe they don't need to forever --- if anything, it is the doctors who tell folks to "just live with it" that frustrate me! If fewer doctors did that, and more research was done on the causes and treatment of multi-systemic illnesses, perhaps the suffering would be ended for a lot of folks.

    There is so much misinformation about Lyme, and it is frustrating to me that it is such an uphill battle to get a diagnosis and treatment -- I'm glad that folks are still making suggestions about appropriate lyme testing on the other board-- some of us (like me) found out about what really ails us because of the ones who just wouldn't stop suggesting.