Lymphomatoid Granulomatosis

alisa d said:

it is very encouraging
it is very encouraging hearing that all of your family members have seemed to overcome or at least recover some normality from this disease.i have done research on lyg because my husband was diagnosed about 8 months ago after being misdiagnosed many times,none of the info i,ve found online seems to be very encouraging at all in fact almost everytime i google lyg looking for the newest info on it i find myself sobbing at the statistics .my husband completed r-chop chemo which worked while he was on it, but after about 6 weeks of no chemo he became symptomatic again,losing weight,coughing,feeling bad.he was then put one a chemo called r-ice with the r in each standing for rituxin..his dr.has yet to mention interferon or bone marrow transplant but we are willing to do whatever it takes to save his life. he is only 28 years old and was a picture of health before he started getting sick from lyg.needless to say this diagnosis has completely changed our lives and has thrown him into an understandable bout of depression.before i read this i was sure this was an uncurable,unsurvivable diagnoses as the statistics i,ve found give a 90% mortality rate within 5 yrs. your stories have given me more hope and help than the 8 months of online research ive done

god bless and keep you all
alisa

jreiter70 said:

Hello All!
I just want to send out some encouraging words. In 2002, at the age of 27, my husband became very seriously ill with this disease. He was stage 3. To be honest, he was near death. Nothing I found on the internet was a very positive read.... No one in our local community has experience with this disease, so I contacted experts at major teaching hospitals that I found online, and they did not have anything too great about recovery either. I basically prepared myself that I would be a widow at 31, with a 6 month old baby. So many people were praying for us, that I believe a true miracle took place. That miracle was finding Dr. Wyndham Wilson at the National Insitute of Health in Bethesda, Maryland. My husband was too sick to commute to treatment so we had to move to the area for a year. Despite my husband's having this disease in his lungs, liver, kidneys, prostrate, brain, and spinal fluid, because of the care he recieved at NIH- and God's grace- he is alive and well today. :-) I can not say enough good about the clinical trial Dr. Wilson is conducting- NIH is an amazing place. He still goes back once a year. We are so thankful to God and Dr. Wilson. For any of you who are struggling with this diagnosis, feel free to contact me or my husband thru this site. Have faith!

Is there anyway you can contact me about this disease? My husband has been sick for 2 years now and we just got a diagnosis of LYG. It has affected his lungs, brain and spine. I just keep praying everyday for a miracle. They are also going to contact Dr.wilson at NIH. He is getting a petscan done on tueday and they are talking about starting him on interferon. Can you please get back to me on the most up to date information on this disease?

drhopps4 said:

lymphomatoid granulomatosis

My husband was just diagnosed with Lymphomatoid Granulomatosis. He has been sick for 2 years now. He has it in his brain, lungs and spine. Can anybody give me more information about this disease and how to treat it. They are talking about interferon. Any information you can provide would be wonderfrul.

 

Hello, I'm new here and can't believe I came across this post. I was misdiagnosed many times while in the hospital in August 2012 after my health started to go downhill. Eventually the LYG diagnosis came after my local hospital sent my lung biospy results to a center in MA or CT. As some have commented before, the statistics online are pretty grim. I was warned by my DR who performed the biopsy and delivered the results to read what you find online with caution.

A little more about me...I was 45 when I learned I had this rare condition late last summer. I'm now 46. When it hit me my weight plummited 30 lbs and I was frequently tired, had a lot of itching, and couldn't sleep. After my first CT scan at the hospital I went on a strict diet of being vegan with juicing, etc. The next scan showed vast improvement of the legions in my lungs in Feb. 2013. Then I "fell off the wagon" and ate meat, dairy, drank beer and my results in October 2013 were "much worse". Since then I've become a vegan again. Even though I've heard of how good a job NIH is doing with some promising therapies it seems they need their own biospy before even staging me. I was wonding what the experts would say about my case.

Question: My situation is nodules/cysts in the lungs and affected nervous system in my legs (can't run anymore, just walk somewhat limping). Does anyone know if NIH has the expertise to actually target other areas of the body such as the legs? (along with the lungs) In some of my reading it appears some people get it in different parts of the body. It's just so rare it's a challenge getting updated information on this.

A great thank you to anyone out there who can provide some feedback and/or guidance for me.

Thanks,

Jon

drhopps4 said:

lymphomatoid granulomatosis

My husband was just diagnosed with Lymphomatoid Granulomatosis. He has been sick for 2 years now. He has it in his brain, lungs and spine. Can anybody give me more information about this disease and how to treat it. They are talking about interferon. Any information you can provide would be wonderfrul.

 

Hello my mom was diagnosed with CNS lymphomatoid granulomatosis grade 2 caused from having auto immune disease.  What grade is your husband's?  Did he receive interferon treatment?  Any information on this disease and treatment would be greatly appreciated.