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  • My appt today with Doctor Raxlen

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    Old 08-22-2007, 12:15 PM   #61
    Smyle
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    Re: My appt today with Doctor Raxlen

    Hi It's My Life-

    I totally relate.

    I am disabled due to Lyme. I can not drive. I have days where I can not read. I have an abnormal EEG and ECG. I get episodes of extreme confusion, chest pain, tingling, dizziness. These things happen on a weekly basis. On a good day I feel like a have the flu. I worked in the same industry in sales for 15 years. Over the years I built up a substantial income to the point where in a good year I made slightly more than my husband. I had to battle for disability through my employer and am still battling to get SS benefits. We do not qualify for any assistance and are doing okay, but when you have kids and your household income gets cut in half it is very stressful.

    I was always, and still am, very concerned about dealing with this issue at my Dr's visits as I am about my condition. Without my disability there is no money for all these out of pocket medical bills and therefore no treatment for Lyme.

    I am sorry that your Dr. does not seem to understand how important and stressful this all is. Can you explain it to him in a letter? You have such a way with words. Also, I can understand if you don't want to answer, but how much does your Dr. charge? I am just curious because his office sits in prime real estate. I hear great things about him but am wondering if his cost reflects the overhead on this type of location.

     
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    Old 08-22-2007, 01:20 PM   #62
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    Re: My appt today with Doctor Raxlen

    Thanks Smyle for the support.
    His cost for the initial visit is 920 and then drops to 450 on the second visit. I don't know if it drops any lower then that. There is no denying he is a terrific doctor and I am very greatful....I think I am still just in a daze from yesterday and was expecting the compassion I saw six weeks ago during our first visit.
    It is my understanding that people with much less clinical evidence have been approved for SSD benefits for Lyme in CT. I think my concern is more about ssd benefits not being enough to sustain me even if approved. I already know what I will receive if approved and it would just cover my mortgage and most of my utilities...I guess that is why I still feel its worth it to try and have hope that maybe I will wake up one morning in the next couple of months with at least one or two of the diseases in remission and be able to go back to work. I think I feel as though the employer wants me to say I do not intend on coming back so they do not have to deal with the monthly approvals. It would be less work for them. I don't know what else to think when a doctor clearly states the prognosis is uncertain yet the company calls me for a return to work date.

    Thanks again for listening!

     
    Old 08-29-2007, 07:22 PM   #63
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    Re: My appt today with Doctor Raxlen

    Hey, its my life!

    Just want to apologize for a mis-naming I did in a post reply to a previous question about a newbie having a ?should I have a Spinal Tap and Spect Scan? and mentioned you might be able to help if you've had your SPECT by now...BUT I called you "take my life"!!! YIKES! So sorry...don't know why that popped into my head, but I do apologize!

     
    Old 08-29-2007, 07:49 PM   #64
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    Re: My appt today with Doctor Raxlen

    Rodney:

    I'm sorry to read that your expected supportive visit with Dr. Raxlen didn't work out as well as expected, especially as your son was with you...

    I think we all feel "sensitive" a good part of the time - if it wasn't for my antidepressants, I'd cry and take personally EVERYTHING! I remember the days when I did and even when I felt stronger, I hated the sensitive times when I was desperate for information and a cure and and seemed to receive nothing of what I needed...sad days indeed!

    I do have a question about the SPECT scan - having done some scans in my day and having had a few (LOL - arghhhh) I believe that the term "perfusions" is referring only to the blood flow, in your instance, in the brain, and should have some kind of descriptive word before it, like "decreased perfusion" for example, meaning that less than the average amount of blood flow in the brain showed on the scan...perhaps in one or more particular areas of the brain.

    I learned that knowing more specific terminology (i.e. the "Impression" or bottom line of the scan report by the radiologist that wraps up the whole report in a few words or sentences) helped me to understand that having less blood flow or other abnormalities in my scans in certain parts of my brain would explain why I was having memory loss, confusion, speech problems, balance unsteadiness, inability to understand, etc etc. and so I could relate to my disease easier.

    Also, Seeing my scan compared to a "normal" scan really helped too. Perhaps the information in fuller terms of the report is what would help your employer understand your diagnosis and problems and the reason why the length of time and probability of cure is so hard to pin down....Can you ask the Doctor's office for a copy of the report? Maybe the Radiology Dept. can help you out with that.

    Just a few thousand words of trying to help ....I'll probably be out cold tomorrow after all this concentration! ROFL

     
    Old 08-29-2007, 08:25 PM   #65
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    Re: My appt today with Doctor Raxlen

    Quote:
    Originally Posted by gerribear View Post
    Hey, its my life!

    Just want to apologize for a mis-naming I did in a post reply to a previous question about a newbie having a ?should I have a Spinal Tap and Spect Scan? and mentioned you might be able to help if you've had your SPECT by now...BUT I called you "take my life"!!! YIKES! So sorry...don't know why that popped into my head, but I do apologize!

    You are actually the only one to remember. See, that used to be my screen name and it was changed without my decision. so no problems!

     
    Old 08-29-2007, 08:29 PM   #66
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    Re: My appt today with Doctor Raxlen

    Gerri, I actually have a contact who was able to get the report to me.
    It was listed as Moderate hyperfusions in frontal lobes and most everywhere else....except areas responsible for vision.

    At this point, my employer has blood test results for six strains of IGM Lyme and two Co-infections...even without the SPECT, that should be plenty.....but I do believe the resultsof the SPECT scan were faxed to them.

    Last edited by itsmylife; 08-29-2007 at 08:31 PM.

     
    Old 08-30-2007, 08:07 AM   #67
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    Re: My appt today with Doctor Raxlen

    Phew! I'm in better shape than I thought! LOL! Thanks for answering!

     
    Old 08-30-2007, 08:15 AM   #68
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    Re: My appt today with Doctor Raxlen

    Okay! Thanks for clearing that up for me! My foggy brain is trying to "picture" the "hyper"perfusion as I have gotten so used to mine as an awfully empty look having "hypo"perfusion...(decreased).

    One more thing to research and wrap my poor ol' brain around so I can visualize what's happening to our brains with this disease...never a dull moment!

    I wish you much success with your employer and this stressful situation and hope you get a good resolution soon. It's terrific that you're hanging in there and able to figure things out!

    BTW - Is your new friend still in the picture? She seemed to be helping.

     
    Old 08-30-2007, 08:40 PM   #69
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    Re: My appt today with Doctor Raxlen

    Gerri, she was a big help a few weeks ago..now, she wants more then I can give and I have to think hard about how I am going to handle it.

     
    Old 08-31-2007, 09:01 AM   #70
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    Re: My appt today with Doctor Raxlen

    Rodney:
    Sorry to hear it's become uncomfortable..just when you think you've found a comfort zone.. hopefully you'll be feeling better with treatment and become strong enough to handle the situation without the stress affecting your health. That kind of relationship is difficult enough in "well" people, so try to take care of yourself more than usual...

     
    Old 09-04-2007, 06:58 AM   #71
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    Re: My appt today with Doctor Raxlen

    tony,, I believe you have an appointment today with dr. r..... how did it go? how have you been feeling?

     
    Old 10-09-2007, 10:30 AM   #72
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    Re: My appt today with Doctor Raxlen

    Rodney......Your in the right place ......I was so moved by your story, and so encouraged that I could get well, that based on your comments I traveled from WA state to NY to see Dr. R...I was scared because I am so dizzy that I thought I might pass-out before I could get to him (ugh).

    I arrived, he was everything you said and more! When I left I cried like a baby, someone had listened, understood, what the last year has been for me.

    I know for me I am highly sensitive and take things personal....Dr. R is human, and I sure it came across wrong. I know this disease has seperated me from others because they just don't understand, however I keep the faith and know I can be my best, even when I feel so badly.

    Dr. R. made a clinical diag., I am now being treated with a cocktail of antibotics. Started to feel worse (herx) I will meet with him again by phone end of the month to get my blood test and see how this round of ant., works.

    I am thinking about you Rodney and sending positive thoughts your way. I credit YOU for the courage to get on that plane and take my health back!

    You are going to get well!!!

    God Bless...

     
    Old 10-09-2007, 05:34 PM   #73
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    Re: My appt today with Doctor Raxlen

    Good Job Jennifer! Congrats.

     
    Old 10-09-2007, 08:16 PM   #74
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    Re: My appt today with Doctor Raxlen

    Thanks Jennifer. I'm so happy that you went to see him.

    Right now I am facing a different stage, the part about being treated and what comes along with that commitment...being out of work and isolated, depressed and not knowing how long it will be before I am in a place where this is in remission.

    So your words give me some positive strength, so thanks for paying me back.

    Rodney

     
    Old 10-12-2007, 02:58 PM   #75
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    Re: My appt today with Doctor Raxlen

    Tony and Rodney..... How did things go with Dr. R??? I hope you both are feeling good... Rodney.. I just finished my first bottle of the juice.. Its to soon to tell yet if its working but its the time of the month that Iam herxing (lucky me), and its not so bad as last month so maybe it is working more then i think...

     
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