Our daughter 13 yrs old is suffering from Lymes disease since Oct 2005. We lived in Stamford, CT from feb 2003 to feb 2005 and came back to India.
She had severe infection in Sep 05 and turned into a vegetative state in 3 months by Dec 05 and doctors in India couldn't diagnose as Lymes does not happen here in India and they lack experience in diagnosis and treatment. We got our friend in Stamford to talk to Lyme Doctor and he advised to get serology done which was positive. She was put on Ceftriaxone IV for 4 weeks in Jan 06 and thereafter regained all her abilities except walking independently. She had a relapse 2 weeks ago and we are planning to take her to USA and meet Dr Charles Ray Jones in CT. I have few queries which can help us to plan our trip to US for our daughter's treatment. I request Patients or Parents whose children have got treated or are under treatment for Lymes from Dr Jones to answer below mentioned queries.
1. From where can we get FREE or subsidized medicines (Rocephin IV) therapy for atleast 2-3 weeks while we are there in US. How much does it cost for 2g and ancillaries (saline + heparine + IV sets + syringes + service charges)and pls recommend pharmacy or store to buy from. 2. What kind of tests for co infections (Lyme plus Bartonella, Babesiosis and Ehrlichia) are done and from where can we get them carried out with reasonable rates 3. What are Dr Jones consulting charges ? (First meeting and subsequent meetings) ..It will help us to plan for overall budget for this short trip.
thanks Sanjay Murgai
Posted by Tincup (Member # 5829) on :
Sanjay...
I have made a few calls to see what can be done to help.... and I am waiting for replies. I'll write again once I get any news.
In the meanime take care of your and your little one.
Sanjay has gone missing again??
Posted by Tincup (Member # 5829) on :
I did not get calls back. Maybe tomorrow. Sorry.
Posted by Lymetoo (Member # 743) on :
I hope Sanjay shows up again. He keeps posting but doesn't read what we post.
Posted by Tincup (Member # 5829) on :
Someone said Sanjay was trying to reach me. Anyone know how? Where?
Thanks!
Posted by Lymetoo (Member # 743) on :
He PM'd me. Do you have any info for him?
Posted by Tincup (Member # 5829) on :
Yes tutu... They called back. Got to talk this evening to them. Here is the message.... and thanks for PMing Sanjay for me.
Sanjay...
I spoke with Dr. J's office this evening and know that several people there are working VERY hard to do all that is required to get you in the country and help you.
If you have a specific question, please let us know so we can try to add to what they are already doing.
I also was thinking... would it be easier for your doctors to just consult with Dr. J by phone? That would save you tons of money and having to get here.
Since you already have someone treating... that might be worth the effort to find out.
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