Getting the run around in Philly. Trying to get treatment.

Discussion in 'Lyme Disease Archives' started by Di1207, Aug 19, 2007.

  1. Di1207

    Di1207 New Member

    I have been very sick for four+ years. I spent one week in the cardio unit with severe chest pains and a racing heart. Then came the fatal puminary hypertenision diagonisis. Then came the MS Scare. All along it was lymes. Just diagonised 4 months ago. My family Dr who is lymes positive found it.He has me on oral antibotics. I started with doxycline for 3 wks and now Im on amoxicillin for the last 2 months. He wants me to seek treatment on my own. Saw a Dr an infectious diseases speicalist this week.According to her I am newly lymes postive because of my western test results. And guess what she said Im curred. If Only. She wanted me to go to a sleep clinic because "not getting enough sleep can cause aches and pains" Also menopause can cause memory loss so there you have it. I have called several other infectious diseases Drs and they dont belive in long term antibotic treatments. HELP.And thanks.
    [This Message was Edited on 08/19/2007]
  2. mollystwin

    mollystwin New Member

    Can't you stay with the lyme doctor you started with? You obviously won't get help from any of the other doctors!

    Why does he want you to seek treatment from another dr? Is he far away from you?

    I would stick with the lyme literate drs, or you wont get the help you need.

    good luck!!!!
  3. Di1207

    Di1207 New Member

    He has been to 5 lymes Drs ( my family Dr is lymes postive) and is getting worst. He wants me to get IV treatment and he can not give me that type of treatment. He said that I am at war and that I must educate myself. He has me on oral antibotics. I am driven and will find a Dr to treat me. I have seen 25 DRs/speicalists in the past 4 year and have great insurance [for now ].I just found this site today and have already learned alot.
  4. mollystwin

    mollystwin New Member

    Your doctor actually has lyme!!! Wow! Do you know how to go about finding a good llmd? Check out Victoria's post.

    Many people have to drive far to see thier llmd. I am very lucky in that I live 20 miles from my dr and I really like him.

    Keep reading and researching, there is lots to know. I wish you the best in your fight with this illness. But at least we have something to fight against and we can get better!!!

    Take care.
    dar
  5. amk33

    amk33 New Member

    I can give you the name and number of a great doctor in N. NJ. She is an expert in the field and does treat with IV. It would be about 1.5 hrs away from you, though. Also, like most LLMD's she doesn't take insurance. You have to get reimbursed by your insurance company.
    Let me know if you want her info.[This Message was Edited on 08/21/2007]
  6. Di1207

    Di1207 New Member

    Wow Bless You, How Can I get in touch with you? I have seen 2 more infectious Diseases Drs this week and what a bust. The one at Jefferson Hosp. In Philly said no lymes (I have 2 postive test and 4 long years of dreadful symptoms). The second one in a mojor teaching hosp. in Philly felt very sorry but couldnt help. He said maybe alittle pot smoking could help some of the pain. My friends and family know what a truthful straight foward person I am or else why would they belive this. Thur night I saw my family Dr and he siad you must get IV treatment and said I sould try Columbia's new clinic.I will try anything. Off of abx for now had a reaction to 2 months of moxicillin. taking the weekend off will start doxi on monday for the second time. Brought olive leaf extract tonight. I am just fatigued cant climb the steps at night.Spent last 2 weekends in bed. ugh. please let me know how to get info. And angels come in all shapes and forms, even on line with a name like amk33. Thank you.
    [This Message was Edited on 08/25/2007]
    [This Message was Edited on 08/26/2007]
  7. amk33

    amk33 New Member

    I replied to your other message...we need to meet in a chat room. I hope that I can help you. I know how horrible this disease can be, and how hard it is to find a good doctor. Let me know a time that we can chat.
  8. KO-LD

    KO-LD New Member

    Hi, I found a great resouce for finding a LLMD and also LD info. Her name is Linda and she is the President of the Michigan Lyme Disease Assoc. (if you do a search on MLDA you will find their website) I would fill out the info section on their website Linda will contact you. She goes to the LD conferences and knows alot of the doctors personally. She is also a wealth of information, and also very nice to speak to. Also Dr. Burrascano's 33 page booklet is really informative. I think you can find that on the ILADS website. Hope this helps!
  9. Di1207

    Di1207 New Member

    hope to be in the chat room this friday evening or on monday.I know its a hoilday weekend but hope to get some answers then. Thanks for all your help and hope everyone feels well
  10. amk33

    amk33 New Member

    I'll look for you Friday...not sure about Mon.
  11. Di1207

    Di1207 New Member

    Hi amk33,
    Internet conection failed firday (figures). So sorry we couldnt connect. I use the computer @ my boyfriends place. I am reduced to part time work and cant aford my own connection.My bills are mounting and I need to pick and choose. I will be back at his place on friday night. Hope you had a healthy weekend. I have had a headache 2 nights straight. Please write back. THANK YOU
  12. amk33

    amk33 New Member

    I forgot anyway. Now I don't feel so bad. It is Monday night now, so I'll sign onto chat and look for you. I'll stay connected on Mon. and Fri. nights. If I am away from my computer, click on my screen name and then click the "I" at the top to see my profile which should give you my email address. I'm sorry that you are feeling so bad. I know how you feel. I really want to get you the info. for the doctor so you can begin your recovery. I wish we could post the info. on the message boards :( Anyway, I hope you feel better this week.
    -Angie
    [This Message was Edited on 09/03/2007]
    [This Message was Edited on 09/03/2007]
  13. Di1207

    Di1207 New Member

    Hello amk33
    Its friday, YEA! I cant get into the chat room. You are so very kind to be worried for me but I have great news. A freind who is an in home health care worker got the # for a doctor who comes highly recommended for treating lymes. He is right here in my county at Riddle Hosp. I have an appointment this tues. Please say prayers that he will help.I also got some lld's from the referal service.The only one within 2 hours drive is a wrong #. Keep fighting ,Keep pushing. Tried to get your e-mail form your profile but couldnt. please kepin touch and God Bless you.
  14. amk33

    amk33 New Member

    Wow, that will be convenient. You are lucky to find someone so close. It took me a long time to find someone near me. Most people have to drive far to a LLMD. Good luck with everything. I hope it works out. Half the battle is finding the right doctor and getting the right diagnosis.
    -Angie