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Chronic Lyme Disease

FibberMckeeFibberMckee Posts: 12,837 AG
An old friend from CT recently visited, who has had Chronic Lyme Disease for a couple of years & doctors don't seem to be able to do anything for him. Poor guy is nearly disabled by it & has been through the mill. Apparently the guides lines only offer a short course on antibiotics & if you're not cured - You're on your own!

He tells me it's controversial & has become a political hot potato, with no reliable test - no proven treatment. It's akin to Chronic Fatigue Syndrome, all tied up with paid sick time & health insurance claims.

Has made me paranoid in the woods now that Ticks have come out of dormancy. Got fresh spray can of DEET. Glad that Lyme is not common here in FL, but had Erlichiosis (sp?) many years ago.

Anybody had to deal with Chronic Lyme? Anybody heard of successful treatments?

Replies

  • GTSRGTSR Posts: 750 Officer
    I contracted Lyme 4 years ago and had it for some time before being diagnosed. Did a ton of research on it, there are plenty of experts on both sides of the discussion. I did go to an infectious disease specialist and it was his opinion that " there is no medical proof that chronic lyme disease exists". There is a documentary, called "Under Our Skin", which speaks loudly about Chronic Lyme and treatments, I watched it on Amazon Prime.

    As far as ticks in Fl, they are a different species and are not known to carry Lyme. My opinion is that Chronic Lyme is showing up as having contracted it and a secondary infection and the combination causes the long term problem. Many recover, and some do not.
    Lyme disease was only given a name and treatment in the 1980's, so it is still "new" and not well understood.
  • woodsrunnerwoodsrunner Posts: 2,235 Captain
    Lyme Disease is only one of about 32 tick borne diseases in Florida. One, Monositic ehrleosis (or some such close spelling) is one that will display most of the symptoms of Lyme Disease. I came down with this in 1992, and the medical folks here in Talla couldn't ID it.....thought I had Chronic Lyme Disease. After 14 months I was down totally, and couldn't drive or hardly walk. My physician, at my insistance, referred me to the Mayo Clinic over in Jacksonville. MAYO ISOLATED AND IDENTIFIED THE DISEASE IN TWO HOURS! Treatment was initiated, and about 7-8 months later I was back up to normal and could continue working---I'm a forester by profession, and worked almost daily in the woods of north Florida/south Georgia. At that time, 24 years ago, I was the second person in Florida known to have contracted the disease. The other was a woman down in the Tampa Bay Area who had contracted it and DIED from it 20 or so years earlier.

    Last data that I referenced through the Mayo Clinic shows that about 30-32 cases have now been ID'd in Florida, most in the northern part. This is largely through recognition of the disease's existence by the some medical people who test for it.

    Something of interest!.....Lyme Disease was "possibly" introduced into Connecticut by German undercover agents slipping over from Canada in about 1944. Immediately after the War medical/disease personnel from Germany who had worked on developing the disease were quickly brought into the Lyme, Conn. area to initiate control efforts. This is all classified Top Secret-Sensitive Compartmented Intelligence, and will probably not be declassified for another 30+ years......wonder if hillery discussed any of this in her emails :grin
  • Dave1Dave1 Posts: 157 Deckhand
    Wife had a tick bite in the middle of her back. A week or so later a red bullseye appeared around the bite. The red bullseye got bigger and we went to our dermatologist. He ordered blood work and tests and she tested positive for Lyme disease in 5 of 7 tests. She was on some high powered antibiotics for about a month and it eventually cleared up with no ill effects afterwards.

    Dave
  • RxcapeRxcape Posts: 22 Greenhorn
    Have your friend look into chelation or stem cells. I work with stem cells and they have an immunomodulation property that have has helped with auto immune diseases. My wife got treated for Chronic Fatigue and it helped her a lot. Feel free to PM me to discuss.
  • FibberMckeeFibberMckee Posts: 12,837 AG
    Here in FL we have Deer ticks, Dog ticks & Lonestar ticks. Many sources say Lyme disease is vastly under reported. The controversy about Chronic Lyme Disease vs. Post Treatment Lyme Syndrome is part & parcel of the politics I'd mentioned.
    GTSR wrote: »
    As far as ticks in Fl, they are a different species and are not known to carry Lyme.

    According to FL Dept of Health: "In Florida, 673 cases of Lyme disease were reported from 2002 through 2011 (average 67 cases per year). Of these, 23% were acquired in Florida and 77% were acquired while the person was traveling in another state or country. Of the infections acquired in Florida, the majority were reported from counties in the northern and central regions of the state. Lyme cases are typically reported in Florida year-round."

    Would you be so kind as to summarize any successful treatments presented in 'Under Our Skin'?
  • navigator2navigator2 Posts: 22,511 AG
    An old friend from CT recently visited, who has had Chronic Lyme Disease for a couple of years & doctors don't seem to be able to do anything for him. Poor guy is nearly disabled by it & has been through the mill. Apparently the guides lines only offer a short course on antibiotics & if you're not cured - You're on your own!

    He tells me it's controversial & has become a political hot potato, with no reliable test - no proven treatment. It's akin to Chronic Fatigue Syndrome, all tied up with paid sick time & health insurance claims.

    Has made me paranoid in the woods now that Ticks have come out of dormancy. Got fresh spray can of DEET. Glad that Lyme is not common here in FL, but had Erlichiosis (sp?) many years ago.

    Anybody had to deal with Chronic Lyme? Anybody heard of successful treatments?

    I don't know what you can do for your buddy, but get some Permethrin to spray your boots and woods clothing. I just lay mine out on the boat and spray one side at at time and let them dry. It will last several washes until you need to do again. Glad I saw this because I'll be in the woods this weekend and keep forgetting. And yes you can catch the disease in the state, know someone personally who got it without leaving the state. He was in bad shape for a while but eventually recovered. I think he ended up flying to PA to see a specialist.
    [SIGPIC][/SIGPIC]
  • GTSRGTSR Posts: 750 Officer
    I am sorry, I saw the documentary 4 years ago... I'd be wrong to try to recall specifics.
    As far as Florida cases and my statement, both my primary care and specialist both said the same thing independent of each other. I suppose it only underscores that lack of consistent information.
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