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momtothree
Regular Member


Date Joined Aug 2006
Total Posts : 293
   Posted 5/14/2009 8:13 AM (GMT -7)   
I read your post about your sister.  I hope that she was able to get treatment and hope from the doctor in MD. 

shadowmom
Regular Member


Date Joined Mar 2009
Total Posts : 24
   Posted 5/14/2009 6:09 PM (GMT -7)   

Hi, Momtothree,

Thanks for your thoughtful post about my sister.  To be honest, we were a little disappointed with "our" appointment with the new LLMD.  I don't know anymore, maybe it's us, but I just didn't get the feeling he took my sister's devastating symptoms seriously.  He basically said that after getting "superior lyme treatment for the past 5 years", we shouldn't be sitting there in his office!  How do you interpret that statement?? That it's all in my sister's head??  I could have burst into tears (didn't), and if you could have seen the look on my sister's face - well, it would have broken your heart.

I don't know where to turn - he did request that she come back in for another appointment in 2 weeks (May 28th) - in the meantime, he took her off all antibiotics - wants her to stay on herbal/vitamins, keep seeing her accupuncturist, go to a completely gluten-free diet, and he'd reevaluate her in two weeks. 

I almost feel like we've wasted another 2 weeks of her life - the weakness, pain, numbness in her lower stomach and legs is continuing - which is scaring the daylights out of her.  She still drags her legs and the fatigue is horrible! 

We handed him a 2 inch thick stack of paperwork - which was a culmination of all previous IGenex tests, blood work, CD-57 levels, MRI's, spinal tap reports, etc., and I tell you the God's truth, I didn't see him look at one piece of paper!  Again, I was so discouraged, I kind of shut down.  He made a very generic statement, which I won't try to quote because I can't remember the exact words he used, but something like "you know, because of lyme's devastation to all body systems, it can trigger many other diseases".  What the heck was that suppossed to mean?

Anyway, sorry for my rant - I just don't know how to help her anymore.  I know there are many, many lyme victims that are in the same situation - frustrated and getting no where fast.  I'm actually going to send georgiagirl a private e-mail - I found a recent post from her where she shared that she believes she's had lyme for 20+ years - is currently off all antibiotics, but I think is still taking herbs, etc.  And, best of all, she indicated she felt "stable"!  I don't want to intrude, and really hope she doesn't resent me contacting her, but I was thinking she might be an excellent resource on additional things we can try that might help my sister.  By the way, my sister's name is Chris, and she is an amazing human being!  So kind, and selfless, always thinking of others first, an incredible, loving Mom to two wonderful boys, and married to her childhood sweetheart for the past 33 years (she's only 54 years old)!  You've been so kind in asking about her progress, that I wanted you to know a little more about her.

Well, guess I'll sign off.  I will pray that you find your answers - and keep you posted if we find the "magic bullet".  Please take care and God bless!

 


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 5/14/2009 8:16 PM (GMT -7)   
My heart goes out to you and all the others lymes infects.it just doesnt seem right we have to suffer, the doctors need to show a lil more compashion, again so sorry your getting the runaround.

my prayers are with you and yours
   RD
                                                                                                                 
 
still looking for answers
 


momtothree
Regular Member


Date Joined Aug 2006
Total Posts : 293
   Posted 5/15/2009 5:22 AM (GMT -7)   

Oh shadowmom, I am so disheartened to hear about Chris's doctor appt.  When I had the bulls eye rash, I was treated with 10 days of a low dose of doxy.  My internist would not give me anymore meds, I was getting better, and said that I needed to see an Infectious disease doctor.  I found who I thought was the best in my area and waited a month to see her.  During my visit with her, I could tell she was not taking me seriously.  I got worse not better, she treated for one month and said that I was cured from Lyme and any remaining symptoms were from reactive arthritis, I was worse than when I started with her.  It was like she washed her hands of me.  It was so discouraging and that is when I found this site and lymenet.  In Oct, 06, I found a LLMD in Md.  An absolutely wonderful doctor.  This doctor studied under Dr B.  My doctor is an internist who got into Lyme because of a family member's illness with Lyme and no one could help her.  I know that LLMD's are very expensive.  But this one is worth every penny.  I was in remission for 1 year and I am just beginning my journey to get there again.  Are you up for another consultation?  I hate that I have to drive 2 1/2 hours to get there, but at least I do not fly in from Europe as other patients do. I am curious as to why he took Chris off all antibiotics? 

 

 


beths
Veteran Member


Date Joined Aug 2006
Total Posts : 690
   Posted 5/15/2009 6:14 AM (GMT -7)   
Momto three-Can you pm me your LLMD? I live in Md too, and feel I'm plateauing with my current LLMD-can't get over that last "hump" I think it is babs, which is undertreated. Thanks-beth

momtothree
Regular Member


Date Joined Aug 2006
Total Posts : 293
   Posted 5/15/2009 7:46 AM (GMT -7)   
beths, my PM does not work, so I sent you an email with the name.  If you do not receive it, check your junk mail it should be there now.  Let me know if it does not come through. I wonder if we see the same one?

shadowmom
Regular Member


Date Joined Mar 2009
Total Posts : 24
   Posted 5/15/2009 9:41 AM (GMT -7)   

Thanks everyone for your kind and compassionate words.  Yes, momtothree, I would love to have the name of your physician - if I have to carry Chris in my arms, we cannot give up.  We also live in Md so the drive can't be too bad.  My PM doesn't work either - I have to get my husband to help me set that up (I'm a little computer illiterate!!).  So you can reach me at susanashields@yahoo.com.

thanks again for all the support!  Take care all!!!


Turquoise Sky
Regular Member


Date Joined Apr 2009
Total Posts : 250
   Posted 5/15/2009 12:48 PM (GMT -7)   
I'll be praying for all of you!
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