Discussion in 'Fibromyalgia Main Forum' started by CooBax, Feb 16, 2006.

  1. CooBax

    CooBax New Member

    Hi Cindycor,

    Isnt firecop good at explaning this whole lyme thing!!! I have not been dx yet with anything...i am waiting on some western blot tests. Dr. M. said if they come back negative to do the Igenex test. Did you do this test? How long did it take?

    I live in New Brunswick so I have only had contact with Dr. M. by email. Have you met him? What do you think of him?

    What are your symptoms? For me I have muscle weakness in my legs, numbness and tingling on and off all over, headaches, dizzy, and tons of muscle twitching? Are your symptoms similar? The mornings are the worse for me.

    What is your plan of action so far? Good luck and hope to hear from you.

  2. pumpkinpatch

    pumpkinpatch New Member

    Good morning: I wanted to reply to you. Yes firecop explains everything so well. I need things in laymens terms. Simple brain!! ha

    Anyway I was tested through Igenex and came up with both positive lymes specific and IND bands and both the FFC doctor and Dr. M. said I had lymes. Also clinical. The Igenex test took about 3 weeks.

    I did have a rash. Happened at our cottage. We were piling old logs in the bush. Went to a clinic but doctor only gave me cream. Symptoms started a few weeks after. Blacking out vision, extreme head pressure, inner ear, chronic sinus, dizzy, sore jaw, ears, etc, zero energy, buzzing head and feet, irregular periods. Now even my knees are starting to look deformed. I can't list everything but the Canlyme list is pretty close.

    I was on biaxin and doxycycline as per FFC clinic instructions but was really going downhill. They were just too strong and my pain was through the roof. Now I'm on the amoxicillan and tinidaloze. Tolerating much better. Also working on hormones, immune, nutrition, digestion, sleep etc.

    I'm about 8 hr. drive to Dr. M. Such a nice compassionate man. If you have any questions make sure to e-mail him. He doesn't mind. 2 LLMD specialists in all of Canada is not enough.

    I plan on doing monthly appointments with Dr. M. Either driving or phone.

  3. CooBax

    CooBax New Member

    Hey Thanks for the quick reply,

    Checked out your profile...beautiful family....I to have two boys but just at younger stages...mine are 8 and 10. I put my picture on today with me and my dogs....its kind of nice to put a face with a name.

    I think what I might do is call Igenex Monday and order the kit....i will send it off and wait for results.

    Before you started treatment did your symptoms come and go? Did you have some good days some bad?

    This is all so crazy......what a ride this has been...I am just at the point now where I want to have a dx.

    Thanks for your soon

  4. CooBax

    CooBax New Member

  5. pumpkinpatch

    pumpkinpatch New Member

    I checked your profile. My sons would die for your dogs! They love animals but this house is just too small. We are building a bigger one and will move in this summer.

    We moved West 2 years ago from Ont. I'm orginally from N.S. My father was in the Forces so we moved alot.

    The Rockies are so beautiful! The trip to Hope, B.C. to see Dr. M. was amazing. Right out of National Geographic. My son and I saw about 100 elk on a frozen pond just before Banff, two weeks ago. Everyone was stopping to take photos! I've noticed seen anything like that.

    You would love the skiing and boarding. My sons drive to Sunshine! About 1 hr. away. I go up the gondula and sit at the top restaurant sometimes they have a band. Saw Colin James last time. I want to get better to start skiing again.

    You should order the Igenex package. The provincial test is not specific enough.

    One other thing I've noticed that I want to ask Dr. M. about is "mottled blotchy skin". Do you have that. I think that has to do with circulation. I did have the hypercoagulation test done through the FFC and it was fine but I'm wondering about this patchy skin.


  6. CooBax

    CooBax New Member


    Aren't my two dogs cute!!! The black one would lick you to death but the other one needs to get to know you before hes very friendly.

    I have not experienced blochy skin or any rash. Well a little rash comes and goes at times but it never stays around.

    I am going to order the Igenex test Monday. Honestly I hope its positive I worry about MS although I have been told by two neuroligists that I do not have it. Did you ever see a neuroligist?

    How do you feel on a daily basis? How long will you be on treatment? I hope you are able to ski sometime soon!


    I have seen Colin James a few times...hes great. My husband and I just saw INXS in Toronto last week and it was awesome!

  7. pumpkinpatch

    pumpkinpatch New Member

    Wow, you saw INXS in Toronto!! How awesome. I think they are coming to Calgary. That JD is a cutiepie! He sounds so much like the original lead singer. Did you watch the competition on T.V. last summer?

    Yes Colin James was awesome. Most of the skiers and boarders were on the trails so I felt like I had front row seats! They played outside on a stage. Sking here lasts until the end of May.

    Do you like to travel? We even lived for 6 months in yellowknife!! I can't believe my hubbie talked me into that one. Some people love the North but I just felt too isolated and was not feeling good at all.

    My oldest son lives in the States and 2 here in Calgary. Plan on being here for the winters and hopefully cottage in summer. The winter here has been so mild. So sunny everyday.

    Back to my health. I pretty well felt the same every day. Everything started with my head and most symptoms are the same and can't forget the stiff neck and really sore upper shoulders.

    I've been taking little bits of xanax and that has helped. Don't feel as panicked.

    Glad your ordering the Igenex test kit. Will your lab take the blood sample. I have to tell you that when I flew to the Denver FFC, she suspected lymes right away. I really think the hormones, immune, other infections etc. are the aftermath of lymes and have to get to the source.


  8. CooBax

    CooBax New Member

    Hey Cindy,

    Yes INXS ROCKSTAR was somrthing my husband and I loved!!! I actually got 6 row floor seats for a concert in Moncton May8th. We are like groupies!!!

    One of our dreams is to ski out West...someday we will make it there. Tim and I spent our honeymoon in was amazing. We love to travel and get away at least once ayear...we love the warm places like Florida, Mexico and this year Jamaica!!

    As far as your you get much neurological stuff? Like muscle twitching? Thats pretty much what I get lots of weakness in my legs and twitching...its crazy.

    well off to take the boys to to you soon