posted
I'm posting this message under "seeking a doctor" and "medical questions" per a member's suggestion.
Hi,
Any opinions on the best choice for a Dr. in CT? We are just in the beginning stages of understanding the full extent of my teen age son's condition. He has been diagnosed 3 times in 4 years with lyme and each time he was only treated with 10 days of antibiotics. Now that I'm becoming more lyme literate myself, I can see that 10 days is a ridiculously short amount of time. On and off for the past four years he's had fatigue, lack of vitality, muscle pain, joint pain, floaters, recurring infections, difficulty falling asleep, absence of pain when burned one time, sensitivity to light especially at dusk, brain fog, poor memory, difficulty finding words . . . and his pediatricians did nothing all these years!! They suggested ADD medication. They looked at me like I was crazy because I kept wanting them to figure it out. Idiots.
Posts: 35 | From Litchfield County | Registered: Mar 2006
| IP: Logged |
I don't know at what age pediatricians are no longer appropriate, but consider Dr. J in New Haven, CT, who is the most lyme literate pediatrician in the world. If the child is too old for him, then someone else will have to suggest. I assume the parents know about CT lyme support groups, which are the best source of info on all docs in state and how they treat.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
posted
It is the same story year after year for kid after kid --and we all learn like this. Someone else here reported their CT doctor said "I don't want to go down that Lyme path." Let me tell you another CT story: I was on Metro North and I got into a conversation with a man who said he's been sick for months, flu, hacking cough, exhaustion, brain fog. He went to doctor after doctor and they all sent him away, then he went to an allergist. The allergist treated him with two months of powerful antibiotics.
What was the dx? I asked the guy.
The allergist told him it was the "flu." I told the guy, you call that doctor up and thank him, he was treating you for Lyme disease --there's no flu you treat like that.
The allergist knew the score, he had to. He KNEW the guy had Lyme, he just treated it without ever mentioning the word, not even to the patient himself.
The guy is almost better except his knees hurt --but after talking to me, he knows what to watch for. For everyone of us, it is a journey through the twilight zone and only RARELY are you lucky enough to run into a medical professional like that allergist, kind enough to do the right thing.
Usually on those occasions, the word Lyme isn't mentioned on any insurance claim or medical chart.
They ALL know here in the suburban northeast, they DO know --they "don't want to go down that Lyme path," not for your sake, but to protect themselves.
Posts: 8 | From CT | Registered: Feb 2006
| IP: Logged |
posted
nothing worse than watching our child struggle with pain and the unknown -- and you feel powerless. try Dr. j -- if he cannot take your son, perhaps his office can recommend someone. New Haven is a trip from Lichtfield but maybe they can help you.
start with having tests run for all the other possibilities -- unless you are sure its Lyme. Rule out everything else first.
Until there is a true test that measures what amount of disease is in the body -- and can then measure how well a treatment has worked, we will all be in limbo.
None of us have all the answers for our kids, just a lot of "trying" to get it right.
best wishes to all of you.
-------------------- mom & co. Posts: 31 | From ny | Registered: Feb 2006
| IP: Logged |
posted
If your son is almost 18, see a doctor who treats adults. The dosages are different. The treatment can be different --and more difficult sometimes, too. I know this from Dr. J. You need someone to follow him for the long-haul. 18 is large enough to need adult doses.
Posts: 8 | From CT | Registered: Feb 2006
| IP: Logged |
bettyg
Unregistered
posted
breaking this up for us neuro lymies...
quote:Originally posted by DeLo5:
I'm posting this message under "seeking a doctor" and "medical questions" per a member's suggestion.
Hi, Any opinions on the best choice for a Dr. in CT?
We are just in the beginning stages of understanding the full extent of my teen age son's condition. He has been diagnosed 3 times in 4 years with lyme. and each time he was only treated with 10 days of antibiotics.
Now that I'm becoming more lyme literate myself, I can see that 10 days is a ridiculously short amount of time.
On and off for the past four years he's had:
fatigue, lack of vitality, muscle pain, joint pain, floaters, recurring infections, difficulty falling asleep, absence of pain when burned one time, sensitivity to light especially at dusk, brain fog, poor memory, difficulty finding words . . . and his pediatricians did nothing all these years!!
They suggested ADD medication. They looked at me like I was crazy because I kept wanting them to figure it out. Idiots.
Welcome to this 24/7 LYME support group board!
Here's TREEPATROL's and Tincup's combination newbie links.
Print off the links then check them off as you read as you could spend several months reading all of this.
print & read Dr. Barrascono's 2005 info first; you will come back to this often.
Extensive info in Treepatrol's newbie links about the meaning of WESTERN BLOT IGM/IGG test results from Igenex! Be sure to read or print this info IF Igenex tested you ok!
Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-12 other illnesses that tick is carrying...lyme, malaria, etc.
If you are showing symptoms of co-infections, I would like to suggest being tested for co-infections when you have LYME western blots done. It isn't cheap!! But if you are positive, you can treat the co-infections first, and then work on LYME symptoms.
EYE SENSITIVIES & NOIR, no infrared sunglasses info., 2-28-06 updated
YES, I have what you have! Are you on doxy too? That made my extreme eyes 200% MORE sensitive than they we were earlier. I learned a lot about eye sensitivity/lighting on www.marshallprotocol.com board. Look for AUSSIE BARB'S EAST FINDER and then eyes/sunglasses, etc. Wealth of info there.
You will need 2% amber and 10% amber ... Style no. 901 and 910. 1-800-521-9746 TOLL- FREE
mention you have lyme and marshall protocol, they will give you 20% off! Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service?
I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be, etc.
from LOU to Betty on LONG web links and Thank You Lou!: "If you hit the return key in the middle of a link, I don't think it will be clickable anymore. An alternative that maybe Betty should be telling people about is the tiny url website. I have it on my tool bar at the top of the page and use it for those incredablylongwebsiteaddresses.
All you have to do is ask tiny url to produce a short version, which it will do with a unique address, which you then use instead in your post. Works just the same when clicked! Here is the website, spread the word!
3-1-06, fyi, I tried dragging tinyurl to my toolbar without success, so that's why I currently have LONG addresses vs. short tiny ones! I'll keep trying.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic