Help Me Get Treated For Lyme!!

$11,901 of $30k goal

Raised by 54 people in 32 months
Özlem Mahüsu Jones  VIRGINIA BEACH, VA

Hi my name is Özlem Jones. I am 33 years old. I am married with 3 children. And I have Lyme disease.



I did not know what Lyme disease was up until January of 2013. Although it turns out I’ve had it for 9 years (now 10). I was bit by a tick during a trip to Tennessee. My husband and I both remember the specific moment I was bit. During that week, I’ve had many symptoms. I had no idea such disease existed. We actually thought I was pregnant and even took a test. When the result came out negative, we figured maybe it was the weather change that made me sick. If I only knew, what I know now. I could have been treated, before it spread to my brain, nervous system, joints and other major organs and declared my body its home.



Over the years I accumulated what seemed to be unrelated problems. If you look at me from out side, you would not guess how much pain I am in everyday. Chronic pain became part of my life, and as one of my doctors had told me, at this point in my life, I might just need to accept that this is it for me. The quality of my life was very low.



Based on a recommendation from a friend, I’ve made a visit to a health professional that specialized in Interstitial Cystitis (IC) (another chronic issue caused by Lyme). This visit changed my life all around. Long story short I’ve found out, I have Lyme, Babesia, Bartonella, Protozoal, Mycoplasma, HHV-6, MTHFR Gene Mutation, COMT, issues with my neurotransmitters...the list just goes on. Unfortunately, on top of all my problems my children are ill with tick bourne diseases as well. They were infected through the placenta.   



I have been treating well over a year now and I've made some progress. Unfortunately, I am still very much bedridden minus the days I feel energetic to be up and about with the support of my cane and wheelchair. It is overwhelming to make slow progress and extremely diffucult to care for children who are also ill when I require care mylself. I would like to take a more agressive approach, so I can get in remission and start caring for my children better.



Through extensive research I found a clinic that takes agressive mesaures to cure Lyme and based on my research so far it seems to be working for their patients. I would like to become one of those people. You can only imagine having a large family and having 4 ill people under the same roof is extremely challenging on a single income. So far we have been making it through by rotating our treatments, since it is very, very, very costly to treat Lyme Disease. Lyme Disease is in its infacy and therfore it doesnt have an approved treatment protocol. Insurance companies take advantage of this situation by rejecting Lyme related claims because they consider it experimental treatment. 


So here I am turning to you for your assistance, so I can heal. Please help me recover. Please help me, so I do what a mother supposed to do and care for my children, not the other way around. Please help me get my life back. Anyhelp you can offer is highly appreciated. Every penny counts, however just in case I made a list of diffrent amounts you could donate. Since anybody who helps will be my hero, I granted each level a diffrent green hero title and based on the level you pick my family and I prepared a small gift as a token of our appreciation. On top of everything, regardless of the level of help you offer, my daughter and I will make a custom mother-daughter jewelery set, if you provide us your mailing address. I design the adult jewelery and my daughter designs the children's one.



Thank you very much for reading my request and considering providing me help. 

 

Have a Happy Lymey Day!!!!

 

If you would like to find out more about me, check out my blog, Facebook page and Twitter profile:

http://extralymey.com/en/journey/

https://www.facebook.com/ExtraLymey

https://twitter.com/ExtraLymey

 

Lutfen dikkatle okuyun ve paylasin!!!!

Merhaba benim adim Özlem. 33 yasindayim. evli ve 3 cocuk annesiyim ve Lyme hastaligim var.

Ocak 2013′e kadar Lyme hastalığının ne olduğunu bile bilmiyordum. Meğerse 9 yıldır hastaymışım (Simdi 10uncu yilima girdim). Tennessee’ye gittiğim bir yolculukta kene tarafından ısırıldım. Isırıldığım ani kocamda bende çok iyi hatırlıyoruz. Kaldığımız bir hafta boyunca bir çok semptomlarım olmuştu. Böyle bir hastalığın var olduğundan haberim yoktu. Hamile olduğumu düşünüp test bile aldık. Test sonucu negatif olunca hava değişikliğinden hasta olduğumu düşündük. Eğer su an ki bilgilerim o zaman olsaydı, yasamım çok farklı olurdu. Beynime, sinir sistemime, eklemlerime ve diger organlarima yayilip, vucudumu Lyme kendine ev yapmadan once; tedavi olabilirdim kolayca.

Yıllar ilerledikçe birbirinden alakasız bir çok sorunum ortaya cıktı. Bana dışarıdan baksan, her gün ne kadar acı çektiğimi bile bilmezsin. Kronik ağrılarım günlük hayatımın bir parçası haline geldi. Hatta doktorlarımdan biri hayatinin böyle kalacağını kabul etmen gerekiyor dedi. Hayat kalitem çok düşüktü.

Bir arkadaşımın tavsiyesiyle, İnterstisyel sistit uzmanı olan bir sağlık profesyoneline görünmeye gittim. Bu ziyaret benim hayatimi tamamıyla değiştirdi. Uzun lafın kısası Lyme, Babesia, Bartonella, Protozoal, Mycoplasma, HHV-6, MTHFR Genetik Mutasyonum, COMT, neurotransmitterlerimin problemli olduğunu ve bunun gibi bir cok problemim oldugunu öğrendim. Ne yazikki, bu sorunlarin ustune birde 3 cocugumda benim gibi hastalar ve onlarda da kene ile gecen enfeksiyonlar var. Iki cocugum hamileyken plasentadan enfeksiyonu kaptilar. Su an günde yaklaşık 25 hap ve 40 damla sıvı ilaç içiyorum. Yakında bu rakam daha da yükselecek.

Nerdeyse 1.5 yildir tedavi goruyorum ve biraz progres yapmatim. Ne yazikki ama hala genel olarak yataga bagli durumdayim. Bazen gucumu buldugumda baston yada tekerli sandelye araciligiyla disari cikabiliyorum. Cok asiri kucuk adimlarla ilerlemek cok zor birsey ve kendim bakima ihtiyacim oldugu icin kendileride hasta olan cocuklarima bakamam beni cok derinden etkiliyor ve uzuyor. Bu yuzden artik daha bir agresif tedavi zamani geldigine inaniyorum, hastaligimin remisyona girmesini sagliyabilmek ve sonuc olarakda kendi cocuklarima bakabilecek duruma gelebilmek istiyorum.

Uzun bir arastirma sonucunda bu hastaligi tedavi etmek icin cok agresif bir yaklasimda bulunan bir hastane buldum. Bu tedaviden gecen insanlarla gorustum ve simdiye kadar olan arastirmama gore, sonuclarin olumlu oldugunu gordum. Sagligina kavusmus insanlar arisna katilmayi cok isterim. Buyuk bir aile olup da ayni cati altinda 4 tana agir hasta bulunmasi tek gelirli bir aile icin (tahmin edebileceginiz gibi) cok zor bir sey - ozellikle Amerikada. Burada Lyme’i tedavi etmek anlatilamayacagi kadar pahali oldugu icin, simdiye kadar tedavilerimize donusumlu olarak devam ettigimiz icin idare ettik. Lyme hastaligi baslangic doneminde olan bir hastalik. Bir cok yerde daha tam olarak bilinmiyor ven anlanmiyor. Bu yuzden kabul edilmis bir tedavi protokolu yok. Buradaki sigorta sirketleri bu durumdan faydalanip Lyme ile ilgili olan sigorta talplerini reddediyor. Sebep olarakda bu tedavilerin deneysel olduklarini one suruyorlar.

Sonuc olarak iyilesebilmem icin sizlere donuyorum. Lutfen duzelmem icin bana yardimci olun. Lutfen bana yardimci olunki, bir annein yapabilmesi gereken, cocuklarima bakabilme gorevimi gerceklestirebileyim. Cunku suan durumumuz tam tersi ve benim cocuklarim 6, 8 ve 13 yaslarinda olmalarina ragmen bana bakiyorlar. Lutfen hayatimi geri kazanmama yardimci olun.

Bagis yapmak icin lutfen asagidaki linke tiklayip DONATE NOW dugmesine basiniz. Lyme'in bir insana neler yapabilecegini bu linke bastiginida resimlerimden ve videolarimdan anlayacaksiniz. Allah kimsenin basina vermesin. Her verdiginiz dolar benim iyilesmeme dogru bir adim olacaktir. Simdiden cok cok tesekkurler. Ailemin kahramanisiniz! 

 

http://extralymey.com/en/journey/

https://www.facebook.com/ExtraLymey

https://twitter.com/ExtraLymey

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Update 24
Posted by Özlem Mahüsu Jones
12 months ago
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It has been a little over a year since I have been to Germany. I wanted to give you a quick update on my status. Germany was the greatest contributor to my journey in my battle with Lyme Disease. The most important thing that I gained back was my ability to take care of myself. Being bedridden/home bound for 2 straight years wasn't fun. Unfortunately, I ran out of funds 2 months post Germany and wasn't able to complete my 1 year post treatment plan. Since then I had 2 surgeries and in a week I will be having another surgery, which gives me more hope to get one more step closer to my health. I accepted the fact that I will never be %100. My dream is to get to at least %80 health. Germany had originally put me to %60 or so. I do not use my wheelchair on regular basis, unless I go to an event where it requires me to stand or walk for an extended period of time. I still use my cane, however I do not rely on it heavily. These are all the positives.

Recently, though I started to experience the comeback of many of my symptoms. Although, I am not bedridden I have to say I do spend a lot of time in bed resting. Insomnia, severe muscle and nerve pain, headaches, sporadically complete loss of vision, muscle weakness and worst of all tremors. I have to say you don't realize a symptom is gone, until it comes back. I am hoping with my next surgery I will see some improvement.

I want to thank all of you tremendously for all of your contributions. I cannot explain my gravitate with words. Life has not been easy, but I gained sight to new dimensions in my life. I made some wonderful friends. I understood the importance of happiness, despite of hardship. I saw how kind and caring people can become. I feel like the luckiest woman in the world. Sometimes I even wonder what I did to deserve people like you in my life. I will check back in when I get a moment again and I promise I will not keep you waiting long next time.

PS: May is Lyme Disease Awareness month and I am one the organizers of this campaign. It would mean the world to me, if you all participate.

Here is the link to our campaign website: http://lymediseasechallenge.org/join-lyme-disease-challenge/

Here is the link to my blog: extralymey.com (I haven't blog in a year there either. I was trying to get myself together. There are a lot of helpful information there and more details about how I got to this point.)

Take Care!
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Update 23
Posted by Özlem Mahüsu Jones
26 months ago
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This is what it looks to travel as a Lymey. These are my meds. Of course need oxygen on the plane. This will be on top of my treatment in Germany and my IV therapy back home. The journey starts. On the road to DC to catch a flight. Stay tuned.

Still don't have the money for my post treatment. Nonetheless I am grateful to be half way there.
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Update 22
Posted by Özlem Mahüsu Jones
27 months ago
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ALL POSSIBLE WITH DONATIONS!!!!
NO THANKS TO HEALTH INSURANCE.

Happiness can come from the most unexpected places. First dose of IV treatment. Pre-Germany protocol. #ExtraLymey #cold #inPain #hopeForCure
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Update 21
Posted by Özlem Mahüsu Jones
27 months ago
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Getting ready for a doctor appointment with a new doctor to see, if this one would be willing to give me my IV treatment and install a port. That is 171 pages long tests and no these aren't my life long test results only the ones from this past year.

Wish me luck!

#Lyme #treatment #hope #extralymey
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Read a Previous Update
Ibn As Sabeel
14 months ago

Go to turkey sister they call it "kene hastaligi" it will be cheaper & easier to get Help. Its very common there.

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$11,901 of $30k goal

Raised by 54 people in 32 months
Created August 22, 2014
CI
$50
Candan Inan
26 months ago

umarım en kısa zamanda iyileşirsiniz

ML
$60
Maurizio Loddo
26 months ago
ME
$100
Merdan Eren
26 months ago (Offline Donation)
SS
$60
Sibel Sezen
26 months ago (Offline Donation)
SK
$60
Sena Kilic
26 months ago (Offline Donation)

Gecmis olsun...

$20
Anonymous
26 months ago
RT
$250
Rolla Talia
26 months ago
VA
$10
Volkan Altan
26 months ago
$25
Anonymous
26 months ago
TA
$100
Tim Ambrosino
26 months ago

Ozlem-I had no idea you were going through this. Just saw it on Facebook. My thoughts are with you and your family. Stay strong

Ibn As Sabeel
14 months ago

Go to turkey sister they call it "kene hastaligi" it will be cheaper & easier to get Help. Its very common there.

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