LLMD Ithaca, NY?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

btrfli11
New Member


Date Joined Aug 2009
Total Posts : 3
   Posted 8/13/2009 6:38 PM (GMT -7)   
My son has been fighting Lyme since he was 12 and he is now 20.  He heads back to college in Ithaca, NY next week and is having a tough time with symptoms.  He is just finishing up a 4 wk treatment of doxicycline and his symptoms have not improved. We've had no luck in CT with a new doctor, and he has neurological symptoms so will need to find treatment in Ithaca.
Any suggestions as to LLMD would very much be appreciated.
 
Please private email me.
Thanks much!
 

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 8/13/2009 8:26 PM (GMT -7)   
Hi btr,

Welcome to the forum! I'm so sorry your son has suffered for so long. Was he ever well? It looks like he may not have gotten the right treatment.

I have some information for you below. If you have any questions, please don't hesitate to ask them.

You can email one of our long time members, Ticker at:
ko_@bellsouth.net to find an LLMD in your area. If you'd like more suggestions, you can email: stephanie@turnthecorner.orgYou can also go to: www.turnthecorner.org/bod.htm and ask for further sugestions.

ILADS is also a great site to find information:
http://www.ilads.org/


For even more info, please read the topic at the top of the first page of this forum tittled "The Basics, Newbies check this out". It will help you get started learning about lyme.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


btrfli11
New Member


Date Joined Aug 2009
Total Posts : 3
   Posted 8/15/2009 6:00 AM (GMT -7)   
Thanks for the reply. Yes he was well. Symptoms flare after month/years of wellness and in the past the doxi has always been fine. I agree it's time to take this to the next level.
Thanks again for your help!

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 8/15/2009 1:39 PM (GMT -7)   
What are his neurological symptoms?
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


btrfli11
New Member


Date Joined Aug 2009
Total Posts : 3
   Posted 8/15/2009 4:15 PM (GMT -7)   

My son was diagnosed with Lyme when he was 12 after complaining of wrist pain for about 6 months.  He was a baseball player,  so he had xrays and a bone scan, but they found the Lyme when they did bloodwork as a last resort thinking it may be juvenial arthritis. 

His first big neuro symptoms started with loss of control of his legs for a few weeks when he was 16, he's almost 20 now.  They kept giving out on him, inability to walk, tingling and cold feeling in his legs and toes.  He also has a back condition called spondylolysis from a baseball injury he got when he was 11, before getting Lyme.  It is like a stress fracture on his L5 vertibrae that won't heal. Doctors keep saying it will eventually heal, or he can have surgury to fuse it once he stops growing.  He has chosen to live with it.  The spine doctors never have felt there is any damage beyond the back pain and he's had many tests. I agree with the doctors that his leg weakness was not a result of his back.  Most athletes with this same injury lead normal lives and it heals within a few weeks, so it is not a serious condition.  He started getting panic attacks at that time, something that came with his initial Lyme infection too. I went to a specialist in Hartford, CT with research in my hands about neurological Lyme from Dr. F that I had gotten from the internet and the specialist told me there was no such thing as neuro Lyme.  My son's Western Blot came back positive "because he will always test positive since he's had Lyme so it was not a valid test" I was told.  However, the doc agreed to treat him with a 3 month supply of doxicycline because of his panic attacks and because I told him my next step was to see a controversial doctor who treated children with Lyme.  The specialist told me he would prescribe the meds if I promised not to see the other doctor.  Within 2 weeks my son was feeling better, was happy and had strength again in his legs and whole body.

Between these 2 infections/flare-ups he has been tested and treated 2 more times for Lyme and put on doxicycline. 

This past April my son blacked out and woke up on his dorm room floor with a concussion and memory loss.  Severe headaches followed along with nausea, vomiting and hand tremors for 3 weeks so he had tests run, CT scan, heart holter monitor, EKG, bloodwork and xrays. Through summer he is still having symptoms and blacked out again, so more testing: MRI, more bloodwork including another Lyme test and EEG.  Nothing conclusive from any tests except an irregular heartbeat and a tiny cyst on brain probably from his birth and he had a positive Western Blot.  Headaches continue, feeling light headed, hand tremors, nausea, tingle in hands and a cold feeling area along his index finger. And he is tired and doesn't feel good. He's on his final week of 4 of doxicycline.

When my son has had health issues I always suspect Lyme because I have done a lot of research on it.  When I have suggested to my son that maybe it is Lyme flaring up he discounted it until this summer.  He was working as an intern at a radio station and a story was done on the Lyme documentary that was recently released. Through research and getting background for booking guests for the show, he realized that I may be right and his symptoms could be Lyme.  The positive test for active Lyme confirmed it.

So, he leaves for college in upstate New York in a few days and he needs medical treatment so we are looking for doctors in both states. He has to go to school fulltime or he loses his health insurance, so that is another issue.  Otherwise I'd say that he needs to take a term off and get treatment.

Sorry this is so long, but that is our story in a nut shell.  Thanks for reading and letting me vent!  The politics behind this disease and the lack of acknowledgment from the mainstream medical community of the research that is being conducted is so frustrating.  My son has had tens of thousands of dollars spent on diagnostic tests that are inconclusive.  Yet they ignore the active positive Lyme Western Blot, it just doesn't make sense!


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 8/15/2009 4:27 PM (GMT -7)   
Wow, he has been through so much. He needs to see an LLMD that deals with neurological Lyme as soon as possible! I am in the same boat right now and am waiting to be accepted by an LLMD that specializes in neuro Lyme. He is 12 hours away but I feel it's worth the drive to get better.

He needs to get treated soon. Neurological Lyme is usually treated with IV antibiotics. I know this is a huge step but he will probably get better faster. IV antibiotics also cross the blood/brain barrier to kill Lyme bacteria in the brain.

I hope you find someone good soon. I feel so terribly bad that he is going through this right when he's trying to go to college.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


not again
Regular Member


Date Joined Jun 2008
Total Posts : 264
   Posted 8/15/2009 4:32 PM (GMT -7)   
I am sorry that you and son is going through this. I hope you are able to find him the help that he needs. I have a friend that sees a llmd in New york, not sure if it is near where your son will be. You can feel free to e mail me , and I can get you the Info. I know he is expensive. Take care.
New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, December 11, 2017 4:09 PM (GMT -7)
There are a total of 2,904,139 posts in 318,725 threads.
View Active Threads


Who's Online
This forum has 158122 registered members. Please welcome our newest member, hollyylouissee.
383 Guest(s), 9 Registered Member(s) are currently online.  Details
moosie, Serenity Now, FoxRun, Lymess, Mark FW, Mergirl, gumby44, FamilyGuy, lapilot