posted
My daughter 13 years old is suffering from Lyme disease since Sep 2005. We lived in Stamford, CT from 2003 till Mar 2005 and then came back to India. After 6 months of coming back, she started having mood swings, social withdrawal, and slowly went into vegetative state losing all her cognitive functions and motor senses in 3 months. Doctors in India didn't have any clue as Lyme does not happen here. We got help from one of our friend in Stamford who consulted doctor and he advised to go for Lyme serology which was positive. She was put on IV Ceftriaxone 4g daily for 4 weeks and in next 6 months regained all her abilities except walking independently. That also has improved after physiotherapy but since last 1 week, she has started presenting same symptoms which were there at start of her illness in sep 2005. We are worried and scared that it could be a case of relapse of Lyme. Need help if some of you may share experience and guide us to also a good doctor willing to provide consultancy to treat her. Indian doctors do not have any experience in Lyme disease. thanks.
-------------------- Sanjay Posts: 7 | From India | Registered: May 2008
| IP: Logged |
So sorry that your daughter is going through all of this... It always hurts to hear of a young teen/child that has this....it is not the way to have a childhood...or teen years...
I have lyme so does my daughter and she has Ehrlichiosis.....first diagnosis when she was 4....treated for a long time....got better...and then when she hit her teens....it all came back...we were warned that when she hit puberty this might happen.... more treatment....she has been good for years....she is now 21 and has relapsed once again...but she responds very quickly to the antibiotics....
sounds like your little girl needs some treatment... I would post in Medical Questions like Lymetoo said and also in Seeking a doctor....
I'm sure someone will be able to give you some advise as to a doctor....
just wanted to say welcome... mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
| IP: Logged |
I am very sorry to hear of your daughter's illness. and that you have the added difficulty getting her care from Indian doctors. My heart hurts for your family. It is a shock to enter this "world" but this disease is treatable so there is much reason to hope.
I, my son, and my daughter all have lyme disease. We got it in the year 2000. We got it diagnosed in 2004. I myself did 18 months of antibiotics which rotated different antibiotics to kill as much of the bacteria as possible. This has been effective for many people; myself and my kids.
There has not been enough research done about this disease, so even the doctors here are struggling to develop the most effective treatment plans.
I have three suggestions for you:
1) You must educate yourself as thoroughly as possible about this disease and related tick-bourne disease. This site has a section under Medical titled Newbies which has a vast array of essential information. This is crucial because your typical doctor will not know very much about lyme so it falls on the patient to make informed choices about which doctors to see, and then to evaluate their decisions as best as you can. This is a burden to lyme patients and parents but many of us are well because we took a very active role in care that is not typically necessary in the treatment of other serious diseases. Read Read Read.
2) You need to get your daughter to one of the top lyme doctors here who is willing to consult with other doctors assisting in her treatment. A top doctor can advice you as to predicted length of intense treatment so that you can plan ahead and figure out how to proceed as a family. Our family made a move away from top doctors and after one year had to move back.
3) Develope relationships with experienced lyme patients and parents. This is a good place to start. For support and also anecdotal information about specific doctors and treatments is priceless on your journey.
Best Wishes,
kpa
Posts: 56 | From Virginia | Registered: Jun 2007
| IP: Logged |
Am I reading right that your daughter was only treated for 4 weeks?
That actually is pretty typical, but unfortunately is not enough to heal Lyme. I've been in treatment for 16 months and am still steadily improving.
You need to find a Lyme literate doctor (LLMD). You can post in Seeking Doctors, but you are going to have to travel. Even living in the US, I still have to travel from Ohio to NY to see mine.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Dear Sanjay,
Very sorry to hear that your daughter has lyme disease. Effective treatment can certainly take longer than the four weeks that your daughter received IV ceftriaxone.
You need a lyme literate medical doctor (llmd). Sounds like there are not any in India, but we certainly have them in the US.
Would your local doctor consult with a US-based LLMD? I will send you a private message with the name of my doctor.
It sounds like it could be a relapse, or please be aware that ticks in CT can carry multiple co-infections that require treatment as well. I am not a doctor, but it sounds like she needs additional antibiotic treatment as soon as possible. My best wishes for her recovery.
Please also post your question in the Medical section, where you will get additional answers.
Posts: 2557 | From home | Registered: Aug 2006
| IP: Logged |
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!
![[Smile]](smile.gif)
![[Frown]](frown.gif)
![[hi]](graemlins/hi.gif)
mtree
Printer-friendly view of this topic