posted
My daughter 13 yrs old is suffering from Lyme since Dec 2005. We lived in Stamford, CT from feb 2003 till march 2005 and came back to India. She carried infection from there as Lymes does not happen in India.
She has CNS lymes and from Sep 05 till Dec 05 became terribly sick (was in a vegetative state with no cognitive ability, no motor senses, loss of speech, nutrition) and Indian doctors couldn't diagnose Lyme due to lack of awareness and experience. Fortunately one of our friend in Stamford referred a doctor and he asked us to do Lyme serology which came positive.
She was put on ceftriaxone IV 2g a day for 4weeks and in 3 months after that regained all her abilities except ability to walk independently. Remarkable progress. In last 2 yrs, there's slow improvement in her legs due to physical therapy.
3 weeks ago, she had a relapse and recurrence of similar symptoms when her illness started in 2005. Her lyme serology IgM titer is 14.2 (Positive). she has been advised IV Ceftriaxone 4g per day and in last 2 weeks she has shown positive improvement.
We are planning to visit Dr Charles Ray Jones in CT, US for his guidance and treatment in July for 2 weeks.
Can someone help us to guide us where we can get medicines at subsidized rates as we do not have insurance coverage in US.
Can we carry IV Ceftriaxone drug for 2 weeks while we are there in US. In India, it costs 3$ for 2g.
Is there a place to go for laboratory tests which can be carried out at reasonable rates or FREE.
How is Dr Jones for treating Lymes and what would be his consulting charges ? incase few of you have taken consulting from him, please share your experience.
anyone providing inputs will be of great help.
thanks Sanjay
-------------------- Sanjay Posts: 7 | From India | Registered: May 2008
| IP: Logged |
northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
^^
Posts: 1331 | From hither and yonder | Registered: Sep 2005
| IP: Logged |
posted
Maybe you mean can you carry the drug from India to the U.S. because it is less expensive in India?
If so, I might mention that my infusion company says ceftriaxone is good for 6 months frozen, good for 14 days refrigerated, or 3 days at room temperature. This is in a syringe, already mixed with saline, that is infused via a central line. Don't know if this suits your purpose. Also, in the U.S., you can get a vial attached to a saline bag with a connector which allows you to mix it yourself just before infusing. That way it would not need to be frozen. But carrying two dozen saline bags would be heavy and I don't know if this type of system is available in India. Or is she doing this by intramuscular injection rather than a central line catheter?
Or another possibility is to bring the drug, which would not take up much room, and get the supplies in the U.S. Flushes and lines would not take up much room in a suitcase, but saline bags might be better bought in the U.S. Will need a prescription for this.
4 grams of rocephin a day seems like a lot for a 13 year old child.
If it is not possible to bring the IV medicine with you, maybe consider some other antibiotic just while she travels? Pills of some kind would be easier to carry. But a doctor's advice would really be needed on this switch for the trip.
Does anyone on lymenet know if there is a Ronald McDonald house in New Haven that might allow this family to stay there, instead of a more expensive lodging?
[ 05. June 2008, 06:23 PM: Message edited by: lou ]
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
Can someone help us to guide us where we can get medicines at subsidized rates as we do not have insurance coverage in US.
Some people do not have any, or enough, insurance. They pay cash, or put it on a credit card. If purchasing in the U.S., some will take prescriptions to discount places such as Wal-Mart, in their community. There have been a few posters who have mentioned finding a better price, but I dont remember names of the stores.
There is no subsidized rate for anyone for testing. Obviously, out of pocket costs are less if you have insurance, since insurance covers most of it.
There are a few specific drug company programs for reduced rates, for people with lower incomes. However, you have to apply and go through a waiting period, and that does not guarantee success. Also, I am not sure but these may be restricted to U.S. citizens.
A few people have used on-line ordering from Canada, but this is quite risky due to quality problems and chances of deceit. It also takes time (weeks and weeks) to receive order.
In your situation, if Dr. J prescribes while you are still in the U.S., and you need it right away, you would just have to find a pharmacy.
However, if you can wait until you return to India, could you have a U..S. prescription ``honored'' and filled in your country? You would have to check your own pharmacy to see if they would accept a U.S. prescription.
Another option is to see your local treating physician, who ordered the current IV, and see if he would write the prescription for India, based on Dr. J's prescription.
This would require communication between Dr. J and your Dr. in India. Based on the price of cef you quoted (3$ for 2 grams), you will never find that good of a price in the U.S., even with insurance. Also, the prescription may be for several months, so your local dr. must be willing to continue to prescribe and must promise to do so.
The only other alternative is to buy here.
If Dr. J wants your daughter to start right away, there could be another solution: just buy enough for 2 weeks while you are in the U.S. (which would be enough to last a few days in India), and pick up the balance in India.
However, I would make an international phone call to your pharmacy to see if you can even get the certain drug in your country, no matter what happens. You do not want to get back to India, and find that it is not available.
As far as medical supplies for IV's: if you are waiting to arrive in U.S., the doctor's office may be able to help. It would be best to call them. If you are bringing in your own antibiotic, but need supplies here, again, call the dr. office.
Can we carry IV Ceftriaxone drug for 2 weeks while we are there in US. In India, it costs 3$ for 2g.
My understanding of what you are asking is:
you are bringing IV Ceft. with you? And you need to know how to store it?
People will travel with coolers, using frozen gel packs, to keep it cool. (see the next posting on ``traveling'', which is put together from some searches I did. It will take me a while to put it together)
If you are asking how to store it once you are here (whether you bring it or buy it, here):
If you are staying in a hotel or a motel, you could call ahead to see if they have a small refrigerator to keep in the room for perishable medicines.
They may not cool as well as a home refrigerator. You could put ice in there (in plastic) to help keep the temperature down.
Another alternative for storing items while you are here, is to buy a larger cooler once you are here. This is not as stable of a temperature, and ice and temperature would have to be monitored and changed a few times a day.
Is there a place to go for laboratory tests which can be carried out at reasonable rates or FREE.
No, this is the U.S.: it is a capitalistic society! Insurance is the only factor that would allow one to pay less. Even then, some of the tests are not covered by insurance even for some people in the U.S., depending on their policy. So many here do pay cash for some of the tests.
All rates are equal for all people, so there is no ``discount''. The doctors have certain labs that they feel are better at finding out what they need to know, and so will use those labs for testing.
Paying:
you may want to have a credit card that is acceptable in U.S. Usually I see Visa or Mastercard on test requisition forms, when used as a prepay.
You could check with Dr. J's office to see if they have suggestions. Obviously, they would not take ``dollars'', and I doubt if you can use a personal check from an Indian Bank.
There is no way to come up with an exact number of dollars required for various items, so credit card seems to be the best.
I know others may have good suggestions , too.
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Sanjay, i'm sorry to hear that your daughter is suffering so much. I hope that Dr. J will be able to help her.
You should be able to bring the Ceftriaxone from India into the US with a note from her doctor or an RX.
You will want to put the medicine in your carry on bags (the fluctuating temps in the cargo area can damage medicines).
Also the TSA limits the amount of liquids that you can have in your carry on. Your airline should have an online link to the TSA guidlines if you are not familiar with them.
Does her antibiotic come premixed and ready for IV use or do you mix the powder yourself? If you mix it yourself, put the powder in your carry on and the saline/IV solution in your checked baggage. If it comes premixed you might want to check expiration dates to make sure that you will have be enough to last you a while in the US.
As for subsidized med rates, check the newbie links. I think that there is some information there. If not, hopefully someone else will come along with that info.
I don't know if this would work but maybe it is worth a try. Could you faxor email the new RX's from her visit with Dr. J to the pharmacy that you have been using in India. It sounds like medicine is a lot cheaper there. Then the pharmacy could ship the meds to you or if they are unwilling, a friend/family member could ship them to you. You would have to wait a few days for the shipment but it might be the most cost effective way for you to get meds without insurance here in the US.
Good luck Sanjay.
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
It says that guests are accepted that are using hospitals in the area, but I think it would be worth asking Dr. Jones office staff if they have had any luck with getting housing for patients at this house. If so, it would make the lodging cost much less.
I am editing this because a search of the archives finds messages from other Dr. J patients/families who have stayed at the Ronald McDonald house. But you will need a reservation, so it would really be worth checking into this.
Another thought is that Dr. J may be doing some testing that could require that the patient be off medicines for a certain period of time before the test. You should ask about that. The office staff will know the answer, whether it is necessary to stop meds and for how long.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
another helpful source might be the Connecticut Lyme Support Groups.
I am not sure of Dr. J's office location, so maybe someone from Conn. might correct, if I have picked the wrong one.
Here is one, which I found in Support Groups, on the top left hand of this page:
Name of Support Group: The Greater Hartford Lyme Disease Support and Action Group
Contact Person for this Group: Chris Montes and Randy Sykes
Regions of your state / province served by this group (i.e. south-east Pennsylvania): Anyone in the Hartford Counties area
Other Information: We will be meeting on the third wednesday of every month in the Farmington/Unionville Community Center located at: 321 New Britain Avenue Unionville, Connecticut.
-------------------- pingpong Posts: 361 | From At the Pingpong Tournament | Registered: Oct 2007
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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.
posted
I don't know if this might be of help but PM me and I can give you the name Lyme specialist located in Hermitage PA who is of Indian origin. Maybe he knows somebody in India that knows about Lyme and can help with antibiotic therapy?
Posts: 655 | From USA | Registered: Sep 2007
| IP: Logged |
posted
Are you there Sanjay? Talk to us so we know you are reading the replies to your thread.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I know that DR J's office will consult with other docs....maybe that would save you a trip over to CT? His rates are very reasonable as well. He makes every effort....for everyone.
Posts: 3528 | From US | Registered: Apr 2007
| 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!
![[Big Grin]](biggrin.gif)
Printer-friendly view of this topic