Stormyskye - Comment very upsetting regarding Lyme

Discussion in 'Fibromyalgia Main Forum' started by Dalphia, Oct 23, 2005.

  1. Dalphia

    Dalphia New Member

    Stormyskey, your statement indicating Chronic Lyme Disease is probably sexual, is is overwhelming. Do you have more information regarding this unlike anything I've researched.
    Sure would like to read some data regarding this possibility if you can advise on subject.
  2. darude

    darude New Member

    I too read somewhere that it can be transmitted. Some people have it but it is dormant thay are just carriers. I'll see if I can find the article.
  3. meowchowchow

    meowchowchow New Member

    I got to the part about the people with ALS being completely recovered. Umm...I thought ALS was terminal and you think if people were being cured we would hear about it.

  4. tansy

    tansy New Member

    There have been cases Dx with ALS, found to have borreliosis/lyme, been treated for it and reversed their illness providing it is caught early enough.

    The borrelia strain identified in Lyme, after which the disease was named, is not the only borrelia strain, there are others as well. Some of these do more damage to the nervous system, the resulting illness may be Dx as ALS or MS.

    My LLMD told me about one such case, he was Dx with ALS (MND in the UK), reliant upon a wheelchair, and his future looked bleak. Following Tx for lyme disease he was able to go mountain walking. Had Tx been delayed permanent nerve damage would have prevented this amazing turn around.

    There have been ALS cases, where lyme has been confirmed, but treatment refused.

    I am sure Don't Like Liver can tell you about other cases that had been Dx with ALS.


  5. Shannonsparkles

    Shannonsparkles New Member

    Is lyme disease transmittable from one person to another through NON-sexual means? Like saliva, or airborne?

    I ask because I believe that my two brothers (who I live with) have Lyme disease as well as myself. I will be getting some treatment for it, but I wonder if I could get re-infected from them. So if this is possible, I would want to make sure that they are threated at the same time as me.

    Thank you. :)
  6. Banka8

    Banka8 New Member

    Since Dr. Lida Mattman was mentioned in the article concerning cell wall deficient bacteria I would like to say that she was one of the speakers at the Autoimmunity Conference held in Chicago this past March hosted by Dr. Trevor Marshall. I have the DVD's of the conference and she explains about cell wall deficent bacteria and the difficulty culturing them. She praised Dr. Marshall for his work. She thinks that the chylamidia bacteria are responsible for some types of heart attacks.

    These bacteria are everywhere and can be transmitted in many ways. And there are many many species. I think I read somewhere there is about 300 species of borreliosis.
    Correct me if I'm wrong my brain fog is at work most of the time.

    We are coming in contact with these little critters all the time.

    So it would sound feasible that your partner could pass them on to you through bodily fluids of any kind. They could be in the water you drink or the food you eat. Cell wall deficient bacteria are very small. They live inside the cells of your body. That is why they are hard to kill.

    It's all very interesting and complicated.

    I'd like to say I'm a genius and understand it all but I have to admit I'm not and I don't.

    Everybody have a nice day and let's get well soon.

    [This Message was Edited on 10/24/2005]
  7. joyfully

    joyfully New Member

    I know that Lymes Disease can be transferred from Mother to fetus because my rheumatologist told me this.

    I have no knowledge about any other transmissions.
  8. elliespad

    elliespad Member

    Hmmm, if "Humans are a 'dead-end' host of the illness meaning that once a human being acquires the illness, it stops right there", can someone dx. with Lyme or a previous dx. of Lyme, but recovered, donate blood? If not, why not? I wouldn't want my child to receive blood components from someone with a Lyme history. (Or any chronic, degenerative illness for that matter)
  9. NancyMystic

    NancyMystic New Member

    Since bacteria & viruses continually mutate to survive & thrive, the possibility of human transmission isn't surprising.


  10. matthewson

    matthewson New Member

    Well said!

    Take care, Sally
  11. jarjar

    jarjar New Member

    Who has been working full time with Lyme patients since the 80's......About 1 out of every 100 of his married patients has a spouse with lyme.

  12. jarjar

    jarjar New Member

    I presume he is basing it on spouses with symptoms of lyme. I do know of married couples that both have the disease. From the newer material that I have read it can be transmitted but I think a lot of it is how strong the other persons immunity is or perhaps there is something genetic where some are more suspect to getting it.
  13. jarjar

    jarjar New Member

    I think the jury is still out on the sexual transmission. I feel it was way more possible to be passed from mother to child from what I have read.

    I have read of where it has shown up in horses sperm.
    But I think it is hard to come to a conclusion till more studies are done.
  14. darude

    darude New Member

    Lots of info on this on YOU TUBE!!!!!!!!! Peoples stories about what happened to them.
  15. damz68

    damz68 New Member

    I would not worry about this. There is NO scientific evidence to prove that lyme can be transmitted from person to person. There is not even evidence to prove that there is a chronic form of lyme. It is all just guessing. It really stinks that they dont do more research on lyme. Until then we have to take the word of an llmd, which is very biased for business reasons.
  16. mollystwin

    mollystwin New Member

    I wouldn't trust anything the CDC says about any illness after the way they handled Chronic Fatigue Syndrome. IMO they are a governmental agency that is supposedly there to protect the public, but I feel they at times do more harm than good. CDC's objective is to underreport infectious diseases. That way they don't have to spend any money on them. At least that's what they did for CFS and Lyme. Their diagnostic criteria is not accurate either. If you followed their criteria, many of those with Lyme would not be considered to have it.

    I would trust a researcher like Lida Mattman before I would believe anything coming from CDC.

    Also my neice has a friend whose entire family was sick for over a year with lyme disease. And none remember being bitten by a tick. They all got sick one after the other.

    Not trying to take sides, I just really believe what Lida Mattman says makes a lot of sense.
  17. jarjar

    jarjar New Member

    This letter is from a lady that is head of the Florida Lyme Advocacy that has given permision to reprint to encourage others to get the word out to friends to sign the petition.


    To my personal family and friends, I hope you will read the following and take 2 minutes to sign on to a petition that has to do with my life and those living with chronic Lyme disease, literally.

    As many of you know, I lost my life savings and the greater part of my 30's to fighting disabling, progressive Lyme infection and its co-infections. Because I was mis-diagnosed and went undiagnosed for so long (the norm); I was bedridden for 2 years, and now spend every day smiling, pushing through and many days scraping through nerve pain
    that feels like I am burning to death from the inside out...this is the permanent nerve damage that will always be a part of my life, along with organ damage and new developments that threaten to one day disable and even end my life prematurely.

    Now, the Infectious Diseases Society of America who has clearly documented financial ties to the insurance industry and is currently partnering with the CDC and pharmaceutical industry has successfully published guidelines being endorsed by the CDC that effectively shut down treatment and access to the very medications that turned my
    disabling neuropathies, demylinating nerves, blurred vision and other systemic deterioration into a slow turn toward recovery.

    The reasons are far too convoluted and historically deep to fully explain why the CDC and IDSA are going out of their way to cover up a
    disease that they have allowed to become epidemic. Some day I can tell you the entire ugly truth if you care to know.

    In essence, however, this petition asks that the clinical expertise of world leading experts treating later-stage, chronic, life threatening
    Lyme disease and its co-infections "in the trenches" to be the guiding force in what is best for each individual patient. It is asking that
    the doctors who know the most about this scope of disease and the most about their patient be allowed to provide all the options available as
    our legal right to informed consent, as well viable treatments that have pulled people back from psychotic state of brain involvement, out
    of wheelchairs, off walkers and back from near death. The treatments that, without which, sadly thousands of died.

    If we do not have these IDSA guidelines dismissed, revised or formally rejected by the CDC, I and millions of Lyme sufferers around the world
    will listen to our doctors who have work tirelessly with us to save our lives, tell us they have the medications and treatments to help us
    walk, work and live; but cannot give them to us any longer. The few experts left who have written off our balance bills, lost their licenses and livelihoods to politically backed witch hunts will have their hands tied from offering clinical expertise, diagnosis and

    In a nut shell, physicians who have NEVER treated later-stage, Lyme disease (because they DON'T EVEN BELIEVE IT IS REAL!) are now dictating what medication and treatment options I can have; never
    meeting me, knowing this disease or having knowledge of newer, better treatments that have evolved as recently as the last year!

    PLEASE!!!!!!!!!!!!!!! Read the message from our national president who nearly lost her own daughter to this disease and click two times; once
    to go the LDA web site and once more time to sign on.

    Without my medication, my disease will move forward as if my life, my courage, and my desire to live doesn't matter. So, too, hundreds of
    thousands of newly-infected to come will never be treated. They will suffer HORRIFIC, unnecessary pain, disability and even death. Parents
    will lose their children, children will lose their dreams, and undiagnosed and untreated Lyme infected will donate infected blood to
    pass our disease to you and your loved ones and friends.

    What is occurring in the Lyme community at the hands of the CDC, Public Health Dept's nationwide, IDSA, and insurance industry is nothing short of legalized homicide. I have the thousands of patient records and photos to prove it...all the lives gone when treatment existed.

    We in the Lyme community are reliving the tragic history of early AIDS patients. PLEASE SIGN THIS PETITION. We deserve to live after all we
    have suffered. We paid our insurance in good faith that our country would value our lives God forbid we ever got sick. We have learned
    quite the opposite.

    Please help us stop the negligence, fraud and human atrocities that are mounting in epidemic proportion among the Lyme disease community
    in our nation as well as worldwide.

    Thank you so much,

    The petition was posted earlier today and can also be found on the Lyme board please sign it as it is so important!
  18. damz68

    damz68 New Member

    What if she did not have lyme. Has it ever occured to anyone that you can be misdiagnosed with lyme. I just can not understand why so many feel that lyme is the final answer. She could have been diagnosed right to begin with and then misdiagnosed with lyme.

    There are some people with cfids that get better withen 3-5 years. If that person has been on abx for a year and then the symptoms clear he/she is going to say yippee for abx and my llmd. The same person could have got better with no drugs at all?

    People, there is no more known about CL than CFS or fibro. If you want to give all your money to an llmd, he/she will gladly take it.

    My llmd is suppose to be one of the brightest docs in the nation. He saw that I tested positive to CMV and asked me if I was permiscuis? Since when is CMV an STD. I stayed with him because it was free(medicaid) and I wanted to give it a shot. I feel the same today as I did before I started the progam a year and a half ago. I am pretty convinced that llmds have found a loophole in the system. With the growing # of cfids/fibro patients, llmds have plenty of business.
  19. jarjar

    jarjar New Member

    If that is how you feel about the whole situation...thats great....its a free country...think what you want.

    I didn't post this to get in a anti lyme arguement.
  20. jarjar

    jarjar New Member

    I agree with you totally....we are on the same page. Its well known that they have weaponized lyme....the government knows well how debilitating lyme can be.

    Thanks god for the marshall protocol as its the only thing that has made me feel close to being a human being again.