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Southward Bound,
Because of the "witch-hunt" mentality, many doctors who treat lyme, especially "late" or chronic lyme, are in danger of losing their licenses. Read or do a google search on Dr. Charles Ray Jones of CT. Or Dr. Joseph Burrascano of NY. Two men who helped so many people, and now they are both in danger of being unable to practice medicine. Both of these doctors have treated thousands of patients, and both may lose their licenses, if they haven't already. Insurance companies are not in business to lose money, but Lyme disease is on the rise, and is very expensive to treat! Then when you think it's gone, it comes back! More antibiotics! More money! That's why never ever on a public forum will someone name their doctor. They are the only hope someone with Lyme has, and you just don't know if they might be the doctor who is targeted next. It all sounds so "conspiracy theory" but it's just not worth taking the chance... If it wasn't for the doctor that we were able to find, I don't know where we'd be today...
Valerie, I did read up on the CT doctor. I didn't know this is going on. I know that doctors never know who's going to sue them next, and they have to be careful with everyone. People forget that doctors are human, and *can* make mistakes (and do) in spite of their best efforts. We've seen that in our own family, but none of us ever thought of suing. Maybe, if the results had been different...who knows. It's hard to say since I haven't been in someone else's shoes. However, to read what's happening to Dr. Ray, that's downright injustice.
Thought I'd share my trip to the infectious disease doctor today.
I had to wait 5 weeks just to get an appt with this guy. I had
an hour and half drive to Nashville as well.
First, I have filled out more paperwork at the dentist office than
I did there. It was one page and didn't even ask for my name
or address. It was a short series of questions.
I took my records from my doc who tested me and this guy looked
at the test results and told me to my face that even with my
positive tests for lyme disease, that he had never diagnosed
anyone with Lyme in Tennessee. It is not prevelant here and
all he could tell me was that I probably had sinus problems or was
hormonal. My husband and I couldn't believe our ears. I told him
that it was here and that others in my area had been diagnosed
as well. He just shrugged it off. I guess all the tests here
are defunct and we are all just suffering with allergies.
He said with all the research done by 100's of specialist in this field that he had never had a lyme case here. He saw people like me who were referred to him but that even with all the tests he just could not confirm lyme. He told me to continue to take the doxy for the full 60 days though.
Why would I do that? I don't really have lyme disease according to him.
This guy was a joke. He said if I lived in Connecticut then he
would think more seriously about it. He would write a letter to my doc and let him know what he thought, but that I needed a ENT doctor and OB/gyn.
I asked for support groups, he basically told me that anyone out there
would not be credible.
OH, he did want to draw blood and redo the lyme test. He thought
maybe the lab didn't do it right. But as he was so
easy to dismiss me I told him I didn't believe that taking another
pint of my blood was necessary at this time, that I would follow up
with my doctor after I had finished the round of doxy. He went on
to say that most people who were referred to him he only saw once
or twice. I can see why.
Oh the test results came back on the Ehrlichiosis and babesiosis and
that was negative. So I am thankful for that.
This was a terrible experience and I don't wish this on anyone.
DCW - What an absolutely horrible thing to have happen and what an arrogant SOB that guy was! Why is it that docs are so easy to blame things (especially in females) on hormones? He probably told you to stay on the doxy because of your "sinus problem." Of course he wanted to do another test - he probably has a hand in the lab he uses (lots of doctors do).....Can you tell I'm a tad cynical about the medical profession??
Do you live anywhere near a medical center? Sometimes they are worth checking out for "specialized care". Before you see another doctor, if you decide to try to find one, insist on an interview with them ahead of time, especially if you have to travel to see one - you want to talk to them on the phone and ask them if they believe it's possible to have Lyme in your area, etc., etc. Whenever I see a new doc, that's what I do - if he/she won't agree to an "interview visit", or one over the phone, then I look elsewhere (unless of course it's an emergency, then you're kinda "stuck"). Basically the doctors are working for the patient (at least in theory) - so as a "consumer" they should be willing to talk to you about their methods of treatment and in your case, if they believe Lyme at least COULD be in your area. I've been known to walk out of a doctor's office if I've had to wait more than 15-20 minutes to see them if it's because they're "running behind" due to poor office scheduling...of course if they had an emergency that caused the back up, that's different....I even billed one for my waiting time - since I work from home and don't get paid time off, it was time I lost from work just to sit there and wait - I couldn't believe it when he actually gave me a check for what I had billed him <g>.....Doctors generally don't like me.....but that's a whole other topic.
If you have a medical center near you, call them and see if there's someone with a more open mind. Or...any medical schools near you? They can be a good resource as well.
I'm really sorry about your encounter with this person. I wonder what his criteria are for proof of Lyme if lab tests don't confirm it for him. Keep searching for the right doc in your area and keep reading about Lyme and the new advances and exploring whatever options are in your area other than this jerk.....
Take care of yourself, and thank you for the update on your day...........
Well, my toddler daughter has been in NH exactly two weeks, and yesterday we found a deer tick *IN* the nape of her neck. We took her straight to urgent care and the doc got it out whole. We're pretty sure that it was in there < 6hrs because we would have noticed it while washing/drying her hair the night before.
Talk about freaked out. She's on 3 weeks of antibiotics just in case and we were briefed on symptoms of Lyme to watch out for.
So, to all you fellow newbies:
1) You're in Tick Central, USA.
2) Tick checks on clothes, and exposed skin after being outside. And check armpits, neck, scalp, etc. in detail after bathing.
3) Use bug repellent. Every day.
4) Spray strollers, car upholstery, car seats, picnic blankets, etc. periodically.
5) Flea/tick treat dogs and cats monthly (don't let kids or pregnant moms touch pets for 12hrs after treating).
So glad that you noted the tick, and got her seen right away. I think about some of the crazy ways people used to remove ticks (hot match heads, gasoline, vaseline) which they now think spreads the diseases more because the tick regurgitates if it' is irritated. 3 weeks of ABX should take care of things, but keep an eye out for ANY skin rashes, not just the "classic" bulls eye rash. Joint pain, stiff neck, etc. So many people have this cavalier attitude about it "it's just a little bug..." and don't worry about it. Good for you in getting her in to have it removed, and kudo's to the doc for getting her on antibiotics!!
I'm curious how many of you have changed your lifestyles because of Lyme disease. I grew up in Mass and saw an occasional tick on our dog, but that was it. We moved to Cali and saw a couple of ticks, but nothing major. Then we came back to Mass last Spring and they were EVERYWHERE(North Shore/Metro West area). At first I was going CRAZY trying to limit time in the woods, changing clothes immediately after going for a walk, spraying all the yucky pesticides, etc., and desperately wishing to go back to my suburban tick-free environment.
Then, I calmed down a bit. We were staying in a soul-less apt next to 93 and there were ticks in the well sprayed landscaping, with maybe a 5 foot border of trees between the apt and the highway!! It made me think about the situation and realize that 1) we're probably safer in a healthier ecosystem with mixed trees and animals and 2) basic precautions are necessary but it shouldn't stop us from getting outside (which we love). So we tuck in pants, spray if we are going near a grassy area (which we generally try to avoid -Cali training about rattlesnakes), stick to trails, spot check clothes and exposed body parts regularly, use tea tree oil bath products, and do a thorough check every single night.
So, am I being reasonable and as safe as can be or do I need to change something?
ticks: this is so irritating that these little buggers have been able to change people's lifestyle in so many ways. i grew up in the northeast near a lot of woods, in which I spent a lot of time exploring. We had a dog and we both sometimes got a tick --a dog tick, which wasn't much of a problem. just take it off and flush it, w/o after effects. w/ these lyme ticks, it's like some creepy exotic disease from a far off place. sure wish the scientists would find some way to control or eliminate them. I know that research is being done, but don't think there is nearly enough funding for this kind of research. Considering how lyme disease is spreading every year in most states of the US, and so affects so many people, there should be much more of an emphasis on it.
ticks: this is so irritating that these little buggers have been able to change people's lifestyle in so many ways. i grew up in the northeast near a lot of woods, in which I spent a lot of time exploring. We had a dog and we both sometimes got a tick --a dog tick, which wasn't much of a problem. just take it off and flush it, w/o after effects. w/ these lyme ticks, it's like some creepy exotic disease from a far off place. sure wish the scientists would find some way to control or eliminate them. I know that research is being done, but don't think there is nearly enough funding for this kind of research. Considering how lyme disease is spreading every year in most states of the US, and so affects so many people, there should be much more of an emphasis on it.
I just posted this in another thread, Suzet's about delaying her arrival here. But I caught the conversation and wanted to post it here, in its appropriate place. They are working on a bacteria-worm called Nematodes to spray and eat the pregnant female ticks. This is more of a prevention to the next generation of ticks and eggs laid. Interesting article, I just hope it doesn't mess up the eco system and give us a new problem. I'll keep my eye on this. Apologies if this has been posted in this thread already- Tackling Ticks That Spread Lyme Disease
We have deer droppings in our yard, and we live out in the thick of a forest-so we're taking precautions. Thanks Rob for the info-I'm glad she's alright, and it woke me up a bit. I had forgotten all about deer ticks, and we have 3 dogs.
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Went to Vanderbilt today
