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This is my Brother's Wife - "I need help"

Discussion in 'Koster Knives' started by Daniel Koster, Mar 9, 2013.

  1. Daniel Koster

    Daniel Koster www.kosterknives.com Knifemaker / Craftsman / Service Provider

    Oct 18, 2001
    (2nd from the right with the black visor on)

    This is her now:
    (watch thru till the end....where she says "I can't. I need help")

    She can hardly walk, is losing her vision, and is in constant pain.

    She got Lyme's Disease - it was misdiagnosed and mistreated as Rheumatoid Arthritis. She has seen specialists all over the country and has received treatments of every kind - from natural/holistic to multiple medicines. Nothing has worked to cure her of Lyme's. Most doctors don't believe it is Lyme's. She has had to seek out sympathetic specialists - whose treatments are expensive and hard to maintain.

    Here's her full story:
    http://raceforemily.com/history/ (watch the video at the end for more info on Lyme's/RA)

    And here is her latest Facebook update:

    If you can spare a few moments, she could use some positive thoughts and encouragement.

    They've set up a Paypal account to help her with her medical bills - for anyone interested - it's on her homepage on the left side "Our Goal": http://www.raceforemily.com (or send to raceforemily AT gmail DOT com).

    It's been hard to see someone that was once active, slowly deteriorate so completely over the years. This will probably upset my brother that I'm posting this here, but it's come to that point...where we have to do everything we can to help her out.

    Thanks for taking time to read this and for posting to Facebook.


    Last edited: May 13, 2013
  2. MostMenAreRuthless


    Sep 27, 2011

    So sorry for all the trials--she and her family are in my prayers. What is the Paypal address you are using for the donations?
  3. Daniel Koster

    Daniel Koster www.kosterknives.com Knifemaker / Craftsman / Service Provider

    Oct 18, 2001
    Thanks for the request - I updated the first post. You can see the donate button on the front page of her website where it says "Our Goal": http://www.raceforemily.com

    or just use this email address: raceforemily AT gmail dot com


    Last edited: Mar 9, 2013
  4. Tahts-a-dats-ago


    May 25, 2011
    Hi Dan,

    I'm not quite sure where to begin. I think the first thing I should do is urge your sister-in-law to find a Lyme literate doctor. There is a good possibility that she will have to travel some distance to see a Lyme literate doctor. It's worth the effort and expense. I haven't taken the time to read her story (I will once I'm done writing this) but being misdiagnosed is the norm. She should keep hunting until she finds a doctor who not only understands Lyme disease (most don't) but also understands how disabling the disease is. There is a Lyme disease website (based in NJ) that can help her locate a Lyme literate doctor. http://flash.lymenet.org/scripts/ultimatebb.cgi

    I would encourage the entire family to do their very best to understand and be completely supportive. One of the tougher aspects of Lyme disease is the fact that many times our family members don't believe we're as sick as we really are.

    I will go to her facebook page and ask some of the numerous Lyme disease groups to help your sister-in-law. It helps to know you aren't the only person going through this, and there are many caring individuals who will do their best to help her deal with the problems she is facing.

    I'm not going to blow smoke here: I don't believe there is a cure for Lyme disease (neither does my doctor). But - it can be controlled and she can feel much better in time. It is likely that she will have to try many different medications in order to find what works for her (it seems that each case/individual is different).

    I've had Lyme disease for 13 years (at least) and was extremely ill for 7 of those years. I truly thought I was going to die. In fact I was told, by the doctor, that I was dying (not my Lyme doctor). I'm much better now, but will never regain my full health.

    Tell your sister-in-law to keep the faith. She can and will get better. It just takes time and proper treatment.
  5. Balldboy

    Balldboy Gold Member Gold Member

    Jun 9, 2003
    I had Lymes 14yrs ago...tested negative twice.

    Went from running races up to and including the 1/2 marathon to walking with 2 canes and then crawling to the bathroom and sometimes sleeping on the floor as getting into bed was too much effort.

    Thankfully I had a pretty sweet collection of high end custom rifles; we sold 1 a month for nearly a year to stay ahead of the bills.

    As posted above, you need a Lymes specialist...don't be afraid to make a real pain of yourself.

    During the ordeal, I thought it might never end...but I responded well once I was correctly diagnosed.
  6. MattyLav


    Jun 28, 2012
    I'm so sorry, prayers sent. I hope she makes a full recovery.
  7. jimh0220


    Apr 15, 2008
    Thanks for bringing this to the site and help your family. It's great to see famiy caring for each other so much. So much of BF is dedicated to stuff in life that won't amount to anything when it comes down to it. You are rising above that to do right for your sister in law. Props to you my friend.
    With regards to Emily, our prayers in our little family in WA our going out to you. You have an amazing story of survival that touches my deeply as it hits me very close to home. Keep pushing on! You are an inspiration to people everywhere and we will be keeping up with your progress and pulling for you.

    Thanks for opening your lives up to us and letting us in for such an important reason.

  8. the4th


    Mar 20, 1999
    My 18 year old daughter, Michelle, went misdiagnosed with Lyme's from age 10 or 11 until she moved in with me at nearly 17. The doctors my ex took her to kept saying it was all in her head, shingles, panic attacks, etc. I know her better than that and talked to a Neurologist that works in the hospital with me. He saw her once, immediately took her off several meds one doctor had prescribed for her migraines, and sent her for a bunch of blood tests. He told me, "I think it's Lyme's, but I want to see the bloodwork first. Sure enough, she popped positive. He then took her off a few other meds and starting testing dosages of new stuff. She has some slight neuropathy and accompanying neuralgia that manifests as migraines and areas of skin that periodically feel like they are burning, but it is pretty well controlled now that her meds are all tweaked and dialed in. We have a friend locally who now walks with crutches, has many other health issues, and nearly died from encephalitis from his misdiagnosis as well. Michelle is one of the "lucky" survivors.

    As a father of a survivor, my prayers go out to your sister-in-law and family.

    Do listen to the advice here and get her to sympathetic doctors who will listed to her every complaint. She will need constants tests and rounds of drugs to kill the spirochetes. Just because she tests clean won't mean anything right away as the bacteria can hide deep in joints undetected for a long time. As stated above, she may never be fully "cured."

    I truly wish you all the best.


    Nov 24, 2008
    praying now for Emily,hope all turns out for the better.

    praying also for all the souls on this forum board so they and theres will be safe in there travels.
  10. My sister has lyme's disease, and has had horrible headaches, partial intermittent paralysis and still has it. Sorry to hear about your sister in law, I didn't know it would get that bad.
  11. Mountain Wildman

    Mountain Wildman

    Aug 29, 2010
    May God overwhelm you with His healing love.
    I will keep you in my prayers.
  12. the4th


    Mar 20, 1999
    Also, I don't know where in her treatment she is, but patients tend to get worse as the antibiotics start killing off the bacteria and they flood the body with dead cell waste. I know my daughter thought she was going to die after she started her first round of Cipro. It's called a Herxheimer reaction. Her Neurologist told her that there is a saying that goes, "If you're Hurxing, you're healing." I don't think the saying helped her feel any better. ;)
  13. Daniel Koster

    Daniel Koster www.kosterknives.com Knifemaker / Craftsman / Service Provider

    Oct 18, 2001
    Thanks for all the kind words of support, guys. It really helps.

    Emily has been to doctors all over the country. At first, just to figure out what has been going on. Then, once she finally got properly diagnosed, to get treatment. That's been the hardest part - no-one seems to be able to treat her properly. Even sympathetic doctors. She has now had other conditions added to the original ones - some of them brought on because of the RA treatment plan. It's been very frustrating for my Brother. Yet, somehow they have remained amazingly positive throughout this experience.

    A few questions of "how can I help" have come in. If you have anything we can put up for sale on their website, I'll give you their address to send it to them. Or they can do consignment too (you hold onto it, then ship it). They did an auction a short while ago and I believe there are items leftover that they're going to set it up again.

    Again, thanks for all the support!

  14. Daniel Koster

    Daniel Koster www.kosterknives.com Knifemaker / Craftsman / Service Provider

    Oct 18, 2001
    I updated the first post. Thanks again for the positive support.
  15. lightleak


    Jun 11, 2009
    Very touching and also shocking. I really really hope she will find an experienced doctor and her condition will improve. I wish her the very best.
  16. riz_aaroni

    riz_aaroni Gold Member Gold Member

    Feb 7, 2007
    She's got my support too. Pretty shocking video too, learning a lot.
  17. Daniel Koster

    Daniel Koster www.kosterknives.com Knifemaker / Craftsman / Service Provider

    Oct 18, 2001
    Sadly, things have taken a turn for the worse the last few weeks - instead of the other way around. :(
  18. 9blades


    Dec 29, 2012
    I'm very sorry to hear that...my prayers are with your family..

  19. superfluities

    superfluities Moderator Moderator

    Jun 29, 2008
    PP Donation sent as well as good wishes.
    IMHO-Maybe a few++ of the other Koster Knife fans could step up too!
  20. Daniel Koster

    Daniel Koster www.kosterknives.com Knifemaker / Craftsman / Service Provider

    Oct 18, 2001
    Thanks, superfluities!!

    Yes, all donations are appreciated - even $5 helps in the long run.



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