In need of some major advice

Discussion in 'Lyme Disease Archives' started by Krista25, Feb 5, 2008.

  1. Krista25

    Krista25 New Member

    I have researched Lyme and have gone through my symptoms and it all just began to make sense to me that this is what I have. I thought for many years that I had a black head or an ingrown hair on my groin, and never had it checked, and finally put two and two together it could be a tick. I am mad at myself I have let it go this long!! I have not been tested yet and am in the process of that right now. However, I have been dealing with this for atleast 5 yrs without any kind of diagnosis.
    I decided that I was going to call Dr. C in MO, and ask if he had any references here in CO, but the receptionist was rude and said, "no, in fact people come down here from CO to see him." I was really offended because it seemed like I was a complete idiot for not knowing this.
    This is all new to me and I am trying to get well, but it seems like nobody cares or wants to help! My 3 yr old is very ill as well and I have a strong feeling that Lyme is the reason. I called my MD yesterday and she said she would do the testing (Western Blot) blood work. I know that is NOT the most accurate, but I decided to atleast give it a try. She said that she would be happy to use a lab of my choice, and would register with them to have it done. I told her I would like to come in and have the black thing on my groin looked at, as well as the blood test and see what it comes back at.
    If at that point we can get a diagnoses (which I understand can be very hard), I will go to a LLYMD. The only problem is it seems like Dr. C in MO is the closest to CO where I live. I just am so scared to go because it seems like I always get my hopes up and end up being devistated because they can't help me. I just want a diagnoses and I want to be well again, but again I am very scared to do anything because there are so many different opinions/facts out there I can't seem to keep it all straight.
  2. mollystwin

    mollystwin New Member

    If your doctor is willing to use the lab of your choice, then I would suggest Igenex lab. You can go to thier website and order the test. They can tell you which to order if you call them. You don't pay until you send it back. Then you can submit to insurance to see if they will pay.

    It would be unusual to have a tick engorged in your skin for that long. I would be interested to see what your doctor says that is. Ticks are so small you can be bitten and never even know it. Your son could have gotten it gestationally if he is ill also.

    Dr C is a very good physician, but I know he is expensive. If you get your testing done by your regular doctor, you can then determine if you need to see him.

    Make sure you post your results here when you get them. Most drs do not know how to interpret the results.

    take care and good luck!!
  3. victoria

    victoria New Member

    I know how hard it is to be sick and have a child sick as well!

    one of the places to go is flash.lymenet.org, there is a referral board there and you can also get a lot of personal feedback, not only on Dr. C (who Munch1958 here sees), but also if there are any good LLMDs closer to you.

    We also have to go out of state... it is well worth the trouble, time and expense. We'd have gotten nowhere here.

    I hope you find some answers soon!

    all the best,
    Victoria

  4. NV

    NV New Member

    There is a Doctor G. in Dallas, Texas, Dallas Doctors Hospital. There use to be a Dr. C, but she married and moved to Frisco, Tx. She was my primary physician and Dr. G was my Neurologist. Maybe they can refer you to someone closer to you because they meet many people in conferences.
    As far as helping you. Dr C did treat the symptoms according to what I told her. She would even be honest enough to stand with two or three books on the counter checking each one and comparing if the meds would mix well together.
    I like a doctor that tells me she will study on something. This doctor may have been from MO. She had the uncanny knack of being able to tune the world out at a moments notice and study a book right there and then. Amazing. She took me through thirteen years of taking care of the side effects of lymes and the side effects of the medication I had to take. She got me over the ulcers, the nausea, the spastic bowel, and even colds and flu.
    Dr G followed my brain infection and symptoms, she was working up a history on each patient and doing her own study of symptoms and reactions of lymes patients. Then my eye doctor explained why the eye twitching and then the visons of a sparkling rainbow came into my eye...I panicked and he told me that it was not actually in my eye but in my brain, in the back portion where vision is located. He was right because when I covered my eyes or closed them, the sparkling rainbow was still there. However in my dream heart, in the time of my mother death, there were rainbows in the sky. On the trip to where she wanted to be buried by her mom, there were two rainbows in the sky, And then the children, her great grandchildren let go of a multitude of balloons with wishes and hopes and feelings written on them or on notes attached to them and they were allowed to fly free. So, when I see that flashing rainbow now...I am calm.
    Be Well, remember you are important and your symptoms are real and you have a right to treatment and cure. You are important, because the progress you make and find can help other find a way. NV
  5. munch1958

    munch1958 Member

    Yeah, I know what that's like! You wait for months for an appointment only to find out the doctor is a jerk. Doesn't believe in CFS, FM or Lyme. Won't treat your pain or your symptoms. Then you walk out crying because they've treated you like a sub human being. Then now what?

    You (or anyone else) can write to me on my aol account
    illinoislyme. I'm Munch on Lymenet. You can send private messages there.

    I see Dr C in Springfield, MO. He's not like that. Yes, he's expensive but you can pick and choose what treatments you'd like to try.

    I had already had my Igenex WB before I went from FFC Detroit. So that was one less test I needed.

    Thus far I'm very impressed with how he's treated me for Lyme, Babesiosis and Bartonella. Dr C knows which Abx to use and what order to attack the pathogens.

    Not too many doctors are familiar with all the coinfections. Many give Abx and hope your spirochetes die of old age but don't treat the other issues that go with Lyme.

    I have a complicated case due to multiple endocrine deficiencies or all my hormones are very low. Plus I have a B12 deficiency and hypercoagulation. Dr C is very comfortable managing the most complex of cases.

    Don't beat yourself up about the black thing on your groin. I'm not making light of it but you can't take back your last breath. Don't spend another second thinking about coulda shoulda woulda. Just change the NEXT second.