Those of you DX'd with LYME, PLS, What STATE do you live in??

Discussion in 'Fibromyalgia Main Forum' started by aintasgoodasIoncewas, Jan 27, 2006.

  1. Are you from one of these 10 listed states,in this report, supposedly from the CDC, that contain over 90% of reported cases of Lyme disease in *1989-1998*, out of the over 125,000 cases that *were reported* ???

    (Yes, I realize, this study is a little outdated, 8 yrs, LOL, but nonetheless, I found it very interesting, these ten states were listed as having over 90% of the cases reported, but, they mentioned other states, that I will list at the bottom, also.

    Here are the 10 states the site listed, as well as annual incidence per 100,000:

    New York- 39,370 21.6
    Conneticut-17,728 54.2
    Pennsylvania-14,870 12.3
    New Jersey- 13,428 16.9
    Wisconsin- 4,760 9.3
    Rhode Island-3,717 37.5
    Maryland- 3,410 6.8
    Massachussettes- 2,712 4.5
    Minnesota- 1,745 3.8
    Delaware- 1,005 14.0

    Now, my personal bet, is that, this study is now, completely inaccurate, just seeing how many people are being treated from just the Texas areas FFC's, I bet a lot of ppl will probably respond from that area's FFC's with Positive Lyme tests? maybe? and also the Atlanta FFC? Of course, that is just one board, (here) and a few people, but, that alone can show... that may no longer be true, what the study up above had shown previously.. as far as 90% of cases...

    The report had gone on to say, Lyme could also hit the pacific coast in states such as Oregon, Washington state, Northern california, areas wherever white tailed deer were.. well, the midwest is FULLLL of white tailed deer!

    Anyways, if nothing else, it would be interesting to see where everyone is from that has tested positive for Lyme? If no one minds responding...

    Take care, (((((((((((hugs))))))))))

    Laura,(aintasgoodasIoncewas)

  2. Countrymom

    Countrymom New Member

    I have lyme. I live in Tennessee, but I think I got sick with Lyme while living in Kentucky. Lots of white tailed dear on our property there and here!
  3. hopeful4

    hopeful4 New Member

    Laura,
    Thank you for posting this. Although it's 10 yrs. old, many of us have been sick that long or longer. I just don't really trust the count. Lyme, as you well know, is underdiagnosed, and underreported.

    I live in Washington State. Also have lived in Ohio and California. Also have traveled to many states all across this beautiful country. Don't know where or when I got it.

    Take care,
    Hopeful4
  4. HppeandMe

    HppeandMe New Member

    Hi there-

    I have Lyme and 3 co-infections of it as well as CFID's. I live in Maryland but I am almost sure that the tick I got it from was from Texas. I received a dog from Texas that was covered in ticks and a week later is when I started to have weird symptoms. No one else touched the dog because of all of the ticks so of course I removed them myself and took him to the doctor the next day. Unfortunately one got me. I am now seeing a LLMD and they test for Lyme and the co-infections but they also have many patients who have symptoms of Lyme that come back negative. They will treat these patients and many will get better. My LLMD doctor sent me to a doctor in Jersey who specializes in Lyme patients with Neurological damage. He told me that 10-20 years ago that many of his patients came in wheel chairs because they were paralized because no doctor would recognize that their symptoms were Lyme. In fact, I know a girl this happened to. As bad off as I am I know that it could be worse although sometimes I don't feel so. My doctor tells me that Lyme only comes up positive if the immune system is strong enough to build the antibodies to Lyme. The only cases the CDC takes are the ones that have positive Western Blots w/ 3 positive bands. Did you know that someone who does not have Lyme can come up positive because they have 3 of the bands but they are not all Lyme bands and actually don't even need to be Lyme bands. It just makes no sense. The doctor in Jersey is thankful that many people are more aware now and don't go by the tests alone but go by the symptoms. So many people are getting better this way. This was even the case with Brooke Shields. The numbers you see are only the ones that the CDC will report. They don't want you to think it is an epidemic. I believe it is. If anyone has the symptoms of Lyme disease you should get to a LLMD (Lyme Literate Medical Doctor). These doctors won't go by tests alone.

    Thanks for the topic AintasgoodasIoncewas! Love the name boy does it apply to me as well!
  5. I couldn't agree with yas more, Like I said, the study is old, & outdated a bit, but I figured some would enjoy the read anyhow, as I did, I just stumbled acrossed it as I was researching.

    I'm one of those, whose integrative medicine doctor, is one smart cookie---I hope... and is not giving up on me,THANK G*D, like all my other JERK doctors have, passing me off,

    Throughout my 6 years of illness, my primary has passed me off to sooo many doctors, surgeons, & specialists, and they passed me off to others, etc. until I have seen over 20+ of them!!!

    Ranging from gynecologists, gastroenterologists, urologists, neurologists, general surgeon, neurosurgeons, radiation oncologist, endocrinologist, rheumatologists, dietician, psychologist (boy did he think my primary was a nut job! HA! that backfired on HER!)

    Even flew from Indiana to Florida for a "top notch Neurologist/integrative type neuro that specialized in neurological disorders, heavy metal toxicity, MS, stroke, parkinsons, ALS, Lyme, Brain Injuries, Diving accidents, etc!" author of "the better brain book" & 2 others, (CRS)

    Anyways, My Integrative doc has tried on his own, treating me for two brief periods for heavy metal toxicity (Mercury and Bismuth), Lyme,(Without testing for Lyme first though) HHV-6, Mycoplasma, EBV, Systemic Candida, Chlamydia Pneumoniae, Hypothyroidism, etc..

    I was on all the tx's for that stuff, then went on I.V. glutathione for 6 months, but then got deathly ill, from a port-a-cath in my chest, had the port cath removed, and still haven't really recovered, from the infections from that, the I.V. glutathione had to be stopped...with no I.V. access anymore.. I have a script for the cream waiting for me at wellness, but haven't gotten around to calling...

    now, I have been tested at the hospital* for Lyme, it was negative, but my integrative medicine doctor, wants me to start a natural tx for my MS, but, he still doubts the dx, but, wants to try tx for it still, but also wants to treat me for Lyme, and would LIKE for me to do a different, $250 dollar Lyme test with a different lab, than the one at the hospital, My husband and I have decided to go ahead and fork over the dough to do the test, since, the MS tx, is 5 IM shots a WEEK......ICK.. if I can IMPROVE WITH LYME TX, LOL.....to heck! with my MS! LOL I've always resisted MS tx, though I'd prefer the natural treatment, I really prefer none at all, if LYME tx can get me to not rely on my wheelchair to go places LOL!

    (((((((HUGS,)))))))

    Laura, (AintASGoodAsIOnceWas)

    G*d Bless Our Soldiers!!!!!!!

    Also, if I didn't mention before, the CDC did say of the study I posted, that LYME Disease was 'SEVERELY' under reported, so they were aware of that, even back then.

  6. karatelady52

    karatelady52 New Member

    In Florida growing up maybe 30 years ago!

    Use to vacation in North Carolina and I was always roaming the woods so it could've been there.

    Sandy
  7. victoria

    victoria New Member

    While I have not had the proper tests as no health insurance,

    my 17 yo son, who was showing the SAME exact symptoms as mine, I did pay to have tested ($3K out of pocket)... he has chronic and active Lyme and has been on abx for past 10 months, may have to do IV abx in 2 months if he doesn't start to show more improvement.

    as a result of the above, a lady in my local support group also went and got tested, was originally dx'd with CFIDS, she also has active lyme.

    I know at least 5 other people in Georgia over past 20 years who have definitely had lyme per blood tests... if we had the extra $$ I'd bet I and my husband had it too.

    all the best,
    Victoria
  8. victoria

    victoria New Member

    He was their star quarterback at Florida State U., found wandering down the street last June mumbling, disheveled, saying he was God... he was found to have Lyme, has been on an IV with abx and has returned to school...

    However altho he is back in school now and was hoping to play football again, he has given it up to concentrate on his studies and getting well.

  9. MaryCecelia

    MaryCecelia New Member

    I've always lived in Kentucky and have Lyme.
  10. vickiw

    vickiw Member

    I had it twice, caught it early, and, having been extensively tested, I'm told it's gone. DH had it once, dog had it once, neighbor had it.

    Obviously we live in a high-Lyme area of a high-Lyme state. The field and woods behind our house are owned by the Agricultural school of a local university. They've done Lyme studies back there. The studies they've done have shown that the biggest carrier of "deer" ticks, at least in this area, are not deer, but the white-footed mouse. (some LD trivia for you :))
  11. LOL! ty, I drew a blank, darn FOG, lol, the white footed mouse, is very popular around your area, and other states around NJ, I could not remember the mouse, along with the white-tailed deer.

    Thank you all for posting, and Victoria, my gosh! how awful! I hope all gets well soon, and how awful as well for that football player,(how awful for *everyone*) but I'm glad he recovered, and so sad he had to make the choice to give up football, but maybe better, and to focus on studies, for now, but wow, to be wandering the streets, so incoherent, claiming to be God, etc...

    You know, I first learned about just how MUCH Lyme disease could affect someone in the tertiary stage, or neuro-lyme, as it's called I guess,

    just how much it can affect a person, maybe..gosh, 5 or so years ago, oddly enough, watching a dumb old "reality show"
    MTV's "the Real World".

    A girl who lived in one of the houses as one of the roommates, started off not telling anyone, that she had Neuro-Lyme disease, until she started getting very very sick again from it, it started with disabling headaches, and then, she basically went "crazy" but, it was just that she was ILL, and needed to go home to HER doctor, for treatment.

    she would start laughing, and pacing the floor, and insulting people, and her laugh was ...odd.. no one would know what she was laughing about or pacing the floor for, she would just cackle...and pick fights, then bawl her eyes out. She eventually left the season early.

    Thanks again everyone for answering, and I hope more will answer, me, as I said, I'm from indiana, and your standard hospital labwork, for Lyme, came back negative for Lyme, we'll see if a lab from which ever dr W. chooses (my bet is it will be Igenex with him) will show...I was in the national guards, and trained at Ft. Leonard Wood,Missouri, Ft Sam Houston,San Antionio,Tx, & Ft. Polk, La., also. Plenty of everything out there, bugs,& scorpions,& snakes, & gators! LOL,& anything in between, brown recluse, black widows, :-O

    Take care, (((((((((((((((HUGS)))))))))))))))

    Laura
  12. damz68

    damz68 New Member

    I most likely got it in 1990 somewhere in the low country of SC. I have spent many hours hiking through the swamps.

    I was born in NY and could have been born with it never know? It is a crazy illness.
  13. victoria

    victoria New Member

    see my post about Kids with Lyme being misdiagnosed as having psychiatric disorders that I posted this morning...

    I find it amazing that this seminar is being given in Florida,

    because when that FSU quarterback was initially dx'd with Lyme, there were MANY doctors in Florida writing into newspapers etc saying there was NO lyme in Florida, much less chronic lyme...

    Glad to see other doctors/hospitals taking it seriously!

    all the best,
    Victoria