Lyme disease in Florida

Lyme disease in Florida

For decades the CDC said that Lyme disease could only be contracted in the Northeast, then, very slowly, they had to admit that it was occurring in southern states but then they insisted it was only because people were exposed elsewhere.

Meanwhile, thousands upon thousands of people contracted “STARI” or “Masters” disease down south (symptoms are identical to Lyme disease) and it has continued to spread.

Here is from the Confounding Debate Over Lyme Disease in the South by Discover Magazine:

“…  And in 1998, Mercer University entomologist Alan Smith learned for himself that while reclusive blacklegged nymphs might not often infect humans in the South, adults did. Bitten by an adult tick in the Piedmont National Wildlife Refuge, a forested area south of Atlanta, Smith developed an EM rash, which he regarded with aplomb despite a low-grade fever and flulike symptoms. His physician initially wanted to treat him with antibiotics. “Oh, no, that’s not necessary,” Smith told his doctor. “The CDC says there’s no Lyme in Georgia.”

Within months, he was nearly crippled. His wife dragged him back to the doctor, and he went on antibiotics. He improved immediately. “There’s definitely Lyme in Georgia,” he says now with a laugh. “It’s a lot of crap that blacklegged ticks don’t ever bite people in the South.”

Unlike heat-fleeing nymphs, scapularis adults do bite, but they’re easy to see and remove. If there really are thousands of cases of Lyme in the South, both Clark and Oliver say something else must be transmitting it: Amblyomma americanum, the lone star tick. And it is on the back of this fierce, ubiquitous, rapidly spreading tick that much of the mystery of Southern Lyme-like illness rests.

But the Florida Lyme Disease Association says Florida is among the top 20 states for the number of cases reported every year.”

To make matters worse, people who suffer Lyme disease in the South face significant challenges due to both misinformation and poor awareness. The Centers for Disease Control’s National Lyme Disease Case Map is misleading to southern citizens and health care providers due to artificially low reported cases.

Facts from the Lyme Disease Association:

  • Studies show that up to half of all patients with Lyme disease received false negative results. This delayed diagnosis means they don’t receive needed treatment in a timely manner.
  • Children are at the highest risk of contracting Lyme disease and are more vulnerable to central nervous system infections.
  • The CDC estimates that there are 300,000 new cases each year in the United States, 10 times more Americans than previously reported. Some experts believe the actual number of new cases could be as high as 1-2 million new cases per year in the U.S. alone.
  • Lyme disease has been called “the great imitator” and can be mistaken for numerous diseases such as ALS, MS, Chronic Fatigue Syndrome, Fibromyalgia, Alzheimer’s, Parkinson’s Disease, autism and other difficult-to-diagnose multi-system illnesses.
  • Lyme disease is prevalent across the United States and throughout the world.

Statistics of Lyme disease in Florida:

  • The CDC’s statistics show an overall increase in Lyme disease cases in Florida and other areas of the United States in recent years.
  • Since 2003, there have been a total of 637 confirmed and 102 probable cases in Florida. Using the CDC’s estimate that there are 10 times more cases than reported, this would equate to 6,370 confirmed and 1,020 suspected cases in the state.
  • The number of confirmed plus suspected cases has more than tripled over the last 10 years in the state. Florida is among the top 20 states for the number of cases reported annually.
  • Florida is considered “endemic” for Lyme Disease by the Florida Department of Health.
  • Lyme disease is typically transmitted by multiple species of ticks that are found in Florida.

Symptoms of Lyme disease:

Believe it or not, the CDC says that Lyme disease is most common among boys aged 5-19.

Children with Lyme disease have special issues. Since they can’t always explain what feels wrong, they may just come across as cranky and irritable. They suffer when their bodies hurt, when their illness disrupts their sleep at night, when they struggle in school, when they don’t even feel like playing. They may feel confused, lost and betrayed by parents and teachers who fail to recognize that they are sick and need help.

Mothers and fathers may not understand what the child’s normal baseline is. Is this the “terrible twos” or “the nine-year-old change” or is something really wrong?

Because the symptoms of Lyme disease can be non-specific, vague and changeable, adults may not even realize these children are ill. They may suspect them of making things up to gain attention or to avoid school. Children with Lyme often have trouble in the classroom, because the disease can contribute to learning disabilities and behavioral problems.

So here in Florida, the state where I now live, most chronic Lyme sufferers share the same story.  They get sick and at first think it must be the flu.  Then:

Step 1: go to regular doctor and begin testing

Step 2: repeat above 3 – 4 times then get referred to Mayo when doctor can’t find anything OR sent to psychologist and end up at Mayo because you know you aren’t crazy.

Step 3: Mayo does tests – by now you suspect Lyme and ASK Mayo to test for Lyme.  Still no diagnosis (Mayo doesn’t do the western blot unless the ELISA is positive even when requested)

Step 4: Fly up north to Lyme specialist and finally receive a diagnosis OR find one of handful of Lyme-literate doctors who accept Medicare because by now you are completely broke and most likely on disability.

The only consolation is that it is relatively cheap and easy to fly north to a LLMD unlike places like Australia where Lyme is also thought not to exist but doesn’t share a continent with acknowledged Lyme disease.

Remember.  Any time you are out of doors where there are ticks you run the risk of getting bitten and contracting the disease.  Always wear a hat treated with DEET and always wear DEET in places where a tick can hide.  AND always do a tick check on your children and each other if you choose to share spaces with the disease ridden scapularis!

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11 Responses to Lyme disease in Florida

  1. Chrissa Kowalski says:

    Hi Jenna- I too am a horseback rider (or was). Your story sounds so similar to mine. Are you still using IVIG therapy? I started this week. I was curious and haven’t gotten all the way through your blog yet. Thanks!

  2. Tom says:

    My brother lives in FL and caught here in MN. He went through that above scenario even being diagnosed with the disease from eating to much seafood with neurotoxin in it and of course rheumatoid because our mother had it. He finally went to a LLMD in MI and it took six months to diagnose. It was another ten months until it went into remission.

  3. Barbara Adrienne Rosen says:

    We are still in the dark ages about Lyme disease and the coinfections that usually accompany it. Forget the Western Blot and Elissa. These two tests are only 50% accurate. The lab for testing, that I most trust, is Igenex in Pasadena, Calif. You can contract Lyme disease, and its coinfections, within the first half hour of being bitten so, the sooner that you deal with the potential problems, the better. Lyme disease can also be transmitted to the fetus and through sexual contact, once the Lyme spirocaetes begin to circulate in bodily fluids. I always have doxycycline around and take it if I have a suspicion that I’ve been bitten. I also use a Lyme protocal tincture everyday as a follow up, as well as Ledum 30 c. a homeopathic remedy. Along with these remedies, protection is my best weapon. I use Sawyer spray on all my hiking and gardening clothes. It lasts for 6 washings or 42 days. For my skin I use Ultimate an herbal concoction, and for deep and hidden places I apply pepperiment essential oil. I would never use Deet on my skin. I do not even walk across a field of mowed grass unless I have complete protection.

  4. Sally Conkey says:

    I agree completely with Barbara’s above statement, although I haven’t used some of the things she has. Igenex in Palo Alto, Ca. is the best place to start with the testing of the tick that has bitten you and then get under the care of a good Naturopathic Physician that specializes in Lymes Disease. I’ve been under care for over a year with my Lymes and hopefully my next tests will come back clear. It’s a constant treatment plan to get rid of the disease. This is my second time to have Lymes as I was diagnosed borderline lymes 4 years ago . I’m unable to take the doxycycline as it causes other problems. The treatment plan I’m on seems to be doing the trick. From what I’ve read about this disease it goes into remission and then pops back up again if a maintenance plan is not followed. Most Dr.’s in my area are not knowledgeable on lymes disease as they have told me there is no lymes in Or. If not diagnosed and treated it can cause numerable other problems in joints, heart , Alzheimer’s and symptoms similar to MS . The list goes on and on of the havoc it can cause. It’s nothing to mess around with.

  5. Gaela says:

    Yes, please forget the traditional Lyme tests and test for the co-infections. Far more accurate and helpful = earlier treatment.

  6. Melanie Guest says:

    Thanks for everything!

    I heard the bologna a bout there being no Lyme in the State of Tx, guess what I had it. I moved to Oklahoma. I was told I didn’t have Lyme. No Lyme in Oklahoma. I still, after 6 years of searching, have no Lyme doctor. Im moving back to Texas, maybe I can have Lyme there now!! Nuts!!

  7. P G Proctor says:

    I don’t know why the author emphasized wearing a hat with DEET, since ticks don’t fly, jump or drop from trees it is much more important to educate people to apply DEET on their socks or pants.

  8. Ashley says:

    I had Lyme disease in 1990. I was just a baby and about died because of this disease. I was bitten in by a tick that was on a dog that my parents had laid me by. Two hours after I started with a fever, not broken with medication or bathing, had a rash covering my back I to my ribs. My parents finally after 5 hours took me to hospital with 102 degree fever and lethargic. The Dr in the er didn’t know what was going on, said I must have the flu. It took 5 nurses, 3 drs, 7 medical books to FINALLY be able to treat me, 2 hours after I was at hospital and revived twice. I died and was brought back twice. This disease is still so unknown and so unresearched that the drs don’t even understand it where I’m living now, southern Indiana. I don’t know what the symptoms are after Lyme disease is treated and drs just blame all my issues on multiple conditions because why blame this unknown disease?

  9. Shasha says:

    Hi, It may not be Lyme. Anything that bites may give 6 infections to a person. A Zyto scan shows infections and how organs/glands are working.

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