Need your input on making a Dr. decision

Discussion in 'Lyme Disease Archives' started by Truesun, Oct 21, 2008.

  1. Truesun

    Truesun New Member

    Hi Everyone,
    I've been a member here for a good while. First, under Chronic Fatigue then in May I was finally diagnosed with Lyme Disease. I had a Pic Line placed and was given 2 1/2 months IV Zithromycin which has helped. The line got infected and had to be pulled due to the fault of the Home Health agency but that's another story. Anyhow, since my diagnosis I have discovered I have passed it to my two sons. The eldest is 17 and trying a combo of oral antibiotics mostly because he won't agree to having a PIC Line placed -Mr. Macho the youngest is only 7 and having many symptoms. This is where I need your help. I come to you because throughout the years of trials MY VERY BEST information has been obtained right here. My baby is suffering thus the whole family is suffering. The Dr. who treats my eldest and I will not treat the youngest. I have made an appointment w/ Dr. Charles Jones in Conn. but can't get in until February. There is a Dr. in Virginia who could see him much sooner -and I hesitate to put his name because of rules here-treating Lyme but he has some red flags. First, I know he got in trouble in NY. Well, Lyme Drs. stick there neck out so I can let that slide. Second, he requires you to sign a release so he can charge your credit card for all services, etc. at will for one year --and everything with him is an extra charge!!! Third, you have to sign a waiver that you cannot use a court of law for malpractice issues but have to use a neutral arbitrator. Well, I have never sued a Dr. in my life but I think that this is quite an odd request. My son's pediatrician gave him 2 weeks of amoxicillian and we are already seeing improvements. He won't keep treating him though and I really do not know what to do. I must add we are not rich and cannot afford to go see this Dr. who requires everything paid upfront and takes no insurance just to be bamboozled. We have been down that road too many times already. I KNOW you understand. Any advice would be welcome. Thanks Truesun
  2. hopeful4

    hopeful4 New Member

    Nothing like being between a rock and a hard place! Well, if I had to make the decision for myself and my son, I would be very uncomfortable with the Dr. in Virginia. As you have said, red flags. The first one, I also could let slide. The others just make me too uncomfortable, esp. the one with the credit card. Is there some other explanation or some protection for you, that maybe wasn't mentioned??

    Here's another idea: Go to lymenet.org, click on Flash Discussion, then on Seeking Doctor. You can post there for the area or state you are looking to find a doctor. Someone will contact you with suggestions.

    Another site is lymediseaseassociation.org

    The good news is that your son responded positively to the amoxicillan...I hope you find him the lyme doc he needs and deserves!

    Best of luck,
    Hopeful4
    [This Message was Edited on 10/21/2008]
  3. lpn9999

    lpn9999 New Member

    Even the IDSA guidelines (http://guidelines.gov/summary/summary.aspx?doc_id=9537&nbr=005085&string=lyme) recommend 14 - 21 days for early localized or early disseminated Lyme disease associated with erythema migrans and 28 days for certain later disease signs.

    10 days is at the extreme low end of the most conservative treatments. Would your pediatrician be open to lengthening the treatment with abx within the guidelines? It may be worth providing data and making the case - would s/he listen? It would help knock back the infection and buy you some time.

  4. Daisys

    Daisys Member

    I would suggest trying to find a LLMD in your area. Lyme.net allows private messaging, so you could get names of the ones closest to you.

    Meanwhile, I don't know if the young age would make a difference, but I'm on Samento and Cumanda while taking a break from ABX. I'm mildly herxing, which makes me feel the spiroketes are not making a comeback, and the herbs may even be treating me in a softer way than the ABX does. I feel that I'm at least keeping them in check while waiting out the SAD days of early winter.

    My doctor recommeded getting the products from NutraMedix. I'm sure they have a phone number you could call to ask about the age appropriateness with these herbs.
    [This Message was Edited on 10/22/2008]
  5. Truesun

    Truesun New Member

    I've been to Lyme.net and the closest Dr. is two hours away and won't see a seven year old. I LOVE the idea of taking my son back to his pediatrician with the guidelines. This may work and at least knock it down a little. I will be looking up the guidelines to print.
    I talked to the Drs. office in Virginia today and they wanted that so they could bill my card for supplements etc. they sent me. I let them know they could do that anyhow when I ordered them and they didn't need a year release for this. They said I didn't have to sign it but just the fact that it is included in the new patient pack disturbs me. Dr. Jones has treated over 10,000 kids and his new patient pack does not have multiple disturbing items. A hate when I feel like they take advantage of our truly desparate state. They know very few want us so they charge a fortune. I ask the cost of phone consults with the Dr. in Virginia and it is $300.00 an hour. I don't know about the rest of you but it takes me awhile to come up with three hundered dollars!!! Thanks. Truesun
  6. lpn9999

    lpn9999 New Member

    Truesun,

    Here's a link to the ILADS version of the guidelines. These guidelines are not as restrictive with the time period for antibiotics.

    http://guidelines.gov/summary/summary.aspx?doc_id=4836&nbr=003481&string=lyme+AND+ilads

    Good luck finding the right care. It sounds like you are on top of things.

    My daughter sees Dr J, and we've been very happy with him.

    - Lisa