Mark's mom needs you guys!!! - Lyme Disease Message Board

laurie864bla · 11-11-2004, 09:28 PM

Hi everyone. I know, long time, no post. My best friend has cancer and I have been up there visiting a lot--researching about her treatments in my spare time. I have been checking in, but not posting. Mark has been going down hill bad. He has been under a lot of stress. Lost his beloved teacher to a car accident and hates his new one, developed a hydrocele in his testicle which really freaked him out, and broke his wrist playing ball. He started out a couple weeks ago being very, very tired again. Now it has progressed to severe fear and seeing things that are really scaring him. Just quick flashes of "brown things" or sometimes hands and then they go away. I have never heard such panic in his voice when he screams, "Mom I need you now!!" His eyes are hurting again, temp is out of whack and all over the place. Bad stomach aches, and body pain. Jerking has returned at night. Unbelieveably spaced out and says he cannot think. Forgetting words, cannot follow a simple direction, and cries a lot and says he forgets everything. What's wrong with me Mom? is a constant question. I told him he is not crazy, and I will be right there with him if he is afraid. Tonight we sat together until late and I told him to just sleep in in the morning. The doc we have been seeing is not a lyme specialist, just a doc I was SO greatful to find b/c he was willing to put him on long term antibiotics. He is really treating arthritis where this is now an accepted practice altho he does agree he has lyme. I have run into so many dead ends with docs that even tho I knew the dose was not really high enough, I was hoping he would get better and what choice did I really have? Bach kicked us out, and everyone else said he was either treated and cured or was not sick with Lyme. I am going to call the Lyme pediatrican in CT in the a.m.. I was going to ask our doc to consult with him next visit, but I feel I cannot wait to hear what he says. Does anyone know if he will talk to me directly, or just have a nurse tell us to make an appt? I really want to see if he will talk to Mark's doc b/c I think he will listen, but not quite sure how to ask him that, or the nurses. We he ever get better? Is his brain being irrepairably damaged? Should I RUN to CT now? Should I insist on IV's? i haven't been this terrified since his hospitalization almost 3 yrs ago. Please help me--tell me what to do. Ticker, are you there? I need you now, please. Please tell me exactly what to do and help my beautiful boy. Please write back as soon as you can. thank you. ----laurie

telvock43 · 11-12-2004, 04:59 AM

Laurie,
I feel so bad for you and mark. I will be around off and on today if you want to chat. One thing that I think of is doesn't he have babesia(s) minocin won;t touch it I have read maybe that is what is going on. Call Dr. B he seems to really care about his patients He might help. I think this is why he like to see people monthly because things can change so fast. By the way I saw the hand thing last year everytime I tried to fall asleep. It is very very scary.
sharon

laurie864bla · 11-12-2004, 06:17 AM

Thanks Sharon,

Sorry I have been out of touch. Nothing personal, just a lot going on obviously. In reply to your post, I can't call Bach---he booted him b/c we asked questions about a blood draw, remember? Sent me papers from an attorney never to contact him again. Did that to someone else on this site, too. I am hoping to call Dr. Jones this morning at 9:00, I'm thinking that's when most open. He is the best LLMD for kids in the country I am told. I also read he never turns down a patient, not even b/c of money. has a fund for things like that. Mark woke up at 6:30 this morning--unlike him. Ususally I must drag him out of bed. He said he could not stop getting electricuted. He is also freezing and does not have a fever. He cannot sit still b/c he says if he stays in one place it hurts his body. Damn this disease! I am going nuts again just watching this! Why can't it just be me. Even my friend Jill says at least it's not her kids with cancer, it's her. She couldn't bare it if it was her child. She asked me this week when she was doing chemo how in the world I could handle watching this in him and wondering if he will ever be alright again. How did I handle having no control if it came back to ravage his body again. I looked at her sitting there, sick from chemo, asking those same questions she's asking herself, and just went in the bathroom and cried. Man do we have a long way to go for decent healthcare in this country. At least her treatments were covered and she had a firm dx, I thought. Terrible of me. What a dx, huh. Oh well--gotta go. Talk to ya soon. --L

ticker · 11-12-2004, 06:56 AM

laurie864bla I am deeply sorry that Mark is so sick. I cannot imagine the heartache you feel. I agree the best thing to do is call Dr. Jones. Pour your heart out to them. Tell them what you wrote here. I am sure they will do whatever they can to help.

YES, Mark can get better. Going through treatment can be very difficult as you know. With the right doctor and aggressive treatment he will get better. Never lose sight of that okay?

Please post an update after you call Dr. Jones' office.

I am sorry you are going through so much right now with your son and your friend. You are all in my prayers.

laurie864bla · 11-12-2004, 08:14 AM

Thanks Ticker,
I called and this answering service answered and said can I have him call you? I asked if the office was open today (it was past that time) and she said yes can I have him call you? Real abrupt. I said my son was not a patient there yet and she asked for our number and I gave it to her. I guess I just have to wait now. God I hate waiting!!!!!!---laurie