Discussions By Condition: I cannot get a diagnosis.

Does somebody has or know GLEICH´S SYNDROME?????? Please

Posted In: I cannot get a diagnosis. 20 Replies
  • Posted By: DenaBel
  • June 24, 2008
  • 11:12 AM

Hi everyone.
I have posted one thread here few days ago. My problems are high EOSINOPHILS, swelling of body and face, high IgM and IgG..... and few other symptoms.
Am still checking and looking for answers and I have found one article about women having same symptoms like me. But it seems, like no doctor here in Slovakia (central Europe) have ever heard about it.
Please, if you know something about this syndrom, or have similar symptoms, let me know.
Thank you.

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20 Replies:

  • Check out this link:http://www.orpha.net/data/patho/GB/uk-IdiopHypereosinophSyndr.pdf
    Anonymous 42789 Replies Flag this Response
  • Hi, my husband has been dealing with Gleich's Syndrome for about 8yrs. We live in Canada. I'm afraid I don't have any words to help you, we are still searching for answers ourselves. I'm going to send you my e-mail so maybe we can keep in touch? They said that he was one of 20 in the world, so it's nice to hear from someone else. They also said it effects young people between 4 and 40 my hubby was 57and is now 65. My e-mail is gsa@nbnet.nb.ca I'll be happy to hear from you. Sis
    Anonymous 42789 Replies
    • November 9, 2008
    • 01:08 AM
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  • Hi DenaBel and Sis,I was looking for some information about Gleich´s syndrome for my husband and was surprised that I found an article just from somebody from Slovakia as we are! They diagnosed hypereosinophilic syndrome to my husband 10 years ago after high eosinophils, itchy swelling and leucocytosis. He is now 35-years old and stopped to be on Prednison and substituted it by Glivec (or Imatinib). Last days doctors say it could be Gleich´s syndrome, because there were no organ damages. However, my husband is still very sensitive to weather changes and suffers big swelling. Could you please let me know what threatment you have and how effective it is? Thank you very much.
    Anonymous 42789 Replies Flag this Response
  • Hi Zuzana.I have just found your message thanks e-mail from Sis. Thank you Sis :) .Could you give me your e-mail address or phone number?Take careDenisa
    DenaBel 2 Replies Flag this Response
  • Hi All,I have heard of GLEICH SYNDROME. It was in an old medical text on Homeopathy. It discussed a patient being relieved after a series of remedies based upon a a miasm called Sycosis. Sycosis is based upon inflammatory conditions. A comprehensive study and a book I can recommend to read is called "Indication of Miasm" by Dr H. Choudhury .. ISBN 81-7021-351-7.The condition is combined with other miasms, but I am sorry that is all I can remember. It was some years back, and not something that is common to be in front of a general basis.I do hope that this can offer you some consolation of a better understanding of this disorder. However, I am sorry that it does not offer you any comfort at this time. Regards,Skyhighnemo.PS. Read more of my posts about Natural remedies and the use and dosages of cell salts.Remember, Natural ALWAYS wins.
    Skyhighnemo 22 Replies Flag this Response
  • Hi Denisa, please call me or text me on 00421 911 011 210. Thank you. Zuzana
    Zuzana 1 Replies Flag this Response
  • Hi everyone.I have posted one thread here few days ago. My problems are high EOSINOPHILS, swelling of body and face, high IgM and IgG..... and few other symptoms.Am still checking and looking for answers and I have found one article about women having same symptoms like me. But it seems, like no doctor here in Slovakia (central Europe) have ever heard about it.Please, if you know something about this syndrom, or have similar symptoms, let me know.Thank you. Hello DenaBel and others,I try as well as possible to write in English. Sorry (excuse me) for my language/write errors.My name is Meggie and I live in the Netherlands. I am a woman of 52 years. I know since 2006 (diagnosis) that I have the sickness: 'Het syndroom van Gleich' = Gleich 's Syndrome.It seems that I am the only person in the Netherlands.My e-mail address: Jannekelieve@hotmail.comDearest greetings, Meggie
    Meggie57 4 Replies
    • August 15, 2009
    • 05:14 PM
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  • I know since 2006 (diagnosis) that I have the sickness: 'Het syndroom van Gleich' = Gleich 's Syndrome.Small correction: I have been mistaken myself: I became my diagnosis in 2007 (and not - such as I wrote - in 2006). I became sick end 2005 and knew eventually in the middle of 2007 that it was : Gleich 'S Syndrome. Dearest greetings, Meggie
    Meggie57 4 Replies
    • August 17, 2009
    • 04:13 PM
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  • My name is Dottie, my husband has had Gleich syndrom for 25 years. I know a lot about this syndrome. Believe it or not, my husband is currently in remission from his disease. He is still sick from the damage of the illness. To find out more about this illness, I would contact Dr. Gleich directly at the University of Utah Hospital. The Phone number is 1-801-581-2955. The address is: University Healthcare, 50 North Medical Drive, Salt Lake City, Utah 84132. My husband went and saw Dr. Gleich and was treated by his wife when he was first diagnosed at age 13. My husbands doctor Dr. Pamela Becker at the Seattle Cancer Care Alliance in Seattle, Washington, United States of America worked closely with Dr. Gleich regarding treatment for my husband. After 5 years of chemo, they found the right drug and he is now in remission. Keep your head up ladies, it will get better. If you would like someone to talk to or need more advice, please email me at dottiej444@yahoo.com. Thanks and God Bless.
    Anonymous 42789 Replies Flag this Response
  • My name is Dottie, my husband has had Gleich syndrom for 25 years. I know a lot about this syndrome. Believe it or not, my husband is currently in remission from his disease. He is still sick from the damage of the illness. To find out more about this illness, I would contact Dr. Gleich directly at the University of Utah Hospital. The Phone number is 1-801-581-2955. The address is: University Healthcare, 50 North Medical Drive, Salt Lake City, Utah 84132. My husband went and saw Dr. Gleich and was treated by his wife when he was first diagnosed at age 13. My husbands doctor Dr. Pamela Becker at the Seattle Cancer Care Alliance in Seattle, Washington, United States of America worked closely with Dr. Gleich regarding treatment for my husband. After 5 years of chemo, they found the right drug and he is now in remission. Keep your head up ladies, it will get better. If you would like someone to talk to or need more advice, please email me at dottiej444@yahoo.com. Thanks and God Bless.hi my name is jackie and in from england i have been realy poorly on and off for the last 13 years now after all this time they are trying to say that it could be this gleich syndrome i get realy bad stomache pains sickness and diahorrea my stomache swells up and i look like i am 8 months pregnant they never told me that i would need chemo to treat this they said i would just need steroids ..
    Anonymous 42789 Replies Flag this Response
  • Hi zuzana! my name is melina I just read your post today....I'm sufering the same ilness since I was 16 and I'm 24 years old rigth now. I don't no who to contact or what to do... Can you help me with any information??Thank you very much!Melina
    melijazz 1 Replies
    • January 4, 2011
    • 02:48 PM
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  • Dear ‘Gleich’ friends Saturday 23/4/2011: Started with chemotherapy: Cyclofosfamide (Endoxan).Daily in tablet form.Thursday, August 18: Stop chemotherapy.The eosinophils were increased during chemotherapy to more than 52% to 60% (6000) of my blood level(s).The sodium content was extremely low.Not so good.Last week I received permission from GlaxoSmithKline - when everything is settled - to start soon using the ‘Mepolizumab’.I hope intense that the 'Mepolizumab' will give me no side effects and that the 'Mepolizumab' really does work for our terrible disease.My hope is only directed on a positive effect, a miracle.I think a lot of you and I hope everything is very well with You?I hope that you will send me a little description of your disease proces?So that we hopefully can learn a little from each other to get our serious illness under control or at least livable.All the best for you, MeggieTo be continued...
    Meggie57 4 Replies
    • September 4, 2011
    • 02:54 PM
    • 0
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  • I noticed nobody has been on here since 2011. Still, I think it's important o post since other out there are looking for answers. I don't really have any. I've just been diagnosed. Oddly enough, a specialist unrelated to this disease searched for eosinophyl and ascities and she found Gleich Syndrom. I have history of multiple diagnosis - Fibromyalgia, and Reactive Airway Disease among others. In December 2011 I noticed the swelling in my face, cheeks, then eyelids. It progressed to include my entire face, including my eyeballs - well, only the sclera (the white part of your eye.) My hands, feet, Wrists & ankles were always sweling up & down. My tongue & throat peaked mid 2012 landing me in the ER several times. Then it started improving.Then my stomach started to swell, until I looked 9 months pregnant. It became painfull & after several Dr visits I ended up in the hospital. A CT scan revealed fluid (Ascities). It turned out, my legs,ankles & feet were swollen too They drained it several times. A month of diuretics resulted in another 25 pound weight loss.But, discontinuing them resulted in some weight gain, so they are trying them at half strength I'm not gaining, but I'm not losing the fluid that accumulated. Right now, my Doctors are deciding who should treat me. And are not sure that the swelling is not Lupus. I'll keep you posted.
    Anonymous 42789 Replies Flag this Response
  • Dear Mr DWall, Thank you for your post about the Syndrome of Gleich.I agree with you that it is very important that as much as possible information and knowlede get's shared about this terrible disease.But it is very hard for me to react in English.I prefer to write in dutch and that you try to translate using a translation site? It seems to me that the prednisolon in the startingphase the illness suppresses and obates the attacks.But, the illness gets more and more aggressive. Stronger and stronger.Finally, the Gleich syndrome does not react on any immune depressant medicine at all.In the mean time AILT (AITL) has revealed (with EBV).The Gleich and the AILT seems to be connected to each other. The more aggressive and active the Gleich becomes, the more aggresive the lymfomen (lymphomas).That is the way this has developed at and with me.A very dangerous disease which required from me to do everything to keep a live. To stay a live.Maybe it is important to check reguarly on the development of lymfomen?To me, it realy realy seems to be connected/related to each other. With the Gleich as leader.Both work at the T-Cells. I wish you a lot of succes and take care. Kind regards, Meggie
    Meggie57 4 Replies Flag this Response
  • I have other Doctor questioning diagnosis.On your comment about not reacting to immune depressents, I have had some success. Related to Gleich, - Hypereosinophilia is the same, except there is some kind of organ involvement. But then I saw that there are sub-categories to the hypereosinophilia - one is auto immune related, also there is a "Sturge-Straus like" variant and others. My new Doctor thinks I might have Sturge-Strauss, which is a vascular disease. She requested results from a lung biopsy that I had earlier. I see her later this week, so maybe I will know something. The last time I took prednisone it didn't work at all. In general the facial sweling is not as bad, but I'm still carrying fluid in my abdomin. It is hard for me to tell what is working because my symptoms come & go on there own as well.No-one else on here has mention Lymphoma, so I am a little confused about that.I'll let you know if i find out anything. Hang in there
    Anonymous 42789 Replies
    • August 20, 2013
    • 05:31 PM
    • 0
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  • Dear all,I have been diagnosed with Gleich's syndrome in 1997 at the age of 25.After initial treatment with prednisolone I have been in remission on a combination of low dose prednisolone (10 mg every other day) and ciclosporine ( 50 mg twice daily). Works great for me, from time to time I try to taper one of those, but everytime I get my old complaints. So I've accepted this combination and have lived without too much problems the last 15 years...I hope some of you will find comfort in knowing it can be controlled sometimes!By the way, my doctor has mentioned that some people respons very well to the drug imatinib, in very low dosage (once weekly).Good Luck all of you!Greetings, Vincent
    Tansan
    • January 3, 2014
    • 07:09 PM
    • 0
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  • After 18 months of testing, my doctor believes I have Gleich's syndrome. My eosinophils range between 15% - 24%. My only symptoms have been consistent swelling in all extremeties, numbness/stiffness/pain in hands that never goes away. I now have neuropathy in both hands. A couple of my doctors did not want to treat my symptoms at all due to prednisone's long-term effects and their answer was for me to just live with it. My immunologist started me on prednisone 10 mg every other day and now I'm o
    Anonymous 1 Replies Flag this Response
  • And now I'm on 20 mg of prednisone every other day but my doc wants to lower although I'm only experiencing about a 40% improvement on the "on" days. My doc tried to find IL5 with no success. I made an apt with Dr Gleich in Salt Lake . I'm hoping to find some treatment regimen that helps reduce my debilitating symptoms.
    Anonymous 1 Replies
    • August 23, 2014
    • 02:06 PM
    • 0
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  • Hello fellow sufferers... I see no new posts since 2014. Can anyone here kindly update if Dr. Gleich or other doctors have found a reliable treatment or even a cure?. I live in Texas formerly very fit 61 year old. Onset of acute symptoms every 3-4 weeks just started this past June 2015. Now in my 4 episode of misery. Face, lips and even ear canals swell, hives rashes, I look like a freak and feel worse. Thanks to anyone who wants to share. Just call me Annie
    Anonymous 1 Replies
    • September 27, 2015
    • 03:00 PM
    • 0
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  • After suffering with cyclical severe facial and foot/hand swelling for at least 10 years, I was diagnosed with Gleich's Syndrome by my allergist about 3 years ago. He prescribed Singulair for me to try, and amazingly, it works! I don't take it daily, but just take one 10mg pill when I feel the first bit of swelling starting. Usually within 10 or 15 minutes, the swelling stops and begins to subside. The longer I allow the swelling to progress before taking the Singulair, the longer it seems to take to control it, though. Singulair isn't a cure, but it almost eliminates the syndrome's disruption to my everyday life, and I've seen no side effects. Just throwing this out there as it may help someone.
    Anonymous 1 Replies
    • October 6, 2015
    • 06:45 PM
    • 0
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