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Old 08-08-2006, 08:17 PM   #1
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Really Bad News!!!

hi everybody!! i am soooo sad and stress, a few months ago i posted about my really good fried, that has been very sick in the last year, and doctors couldnt tell what he had, he had same symtoms as i had, but he was worst... he had all kinds of tests done, and he had a lyme disease test positive, then the doctor did it again and was negative, so he didnt got treatment for that...so i was telling him how doctors dont have a clue, that he sould reqyest to get treated for lyme, etc etc, he had 3 bone marrow, 2 pet scans, tons of blood wor, all the magnetic resonance that exist, all the biopsies you could imagine, lymph nodes, muscle, skin, all bacterias ests, and all he had was anemia, low in red cells.. was diagnose fibromialgia, and vasculitis,... fevers that come and go, weakness, joint pain,rashes, in and out of emergency rooms. all you can imagine, so 2 months ago he decide to go to MAYO clinic, i havent heard from him until today!!!and very sad news, he had stage 4 non hodgkins lymphoma....and it just showed last week!! since he was given hig dosis of steroids, the cancer was hidding! and he almost came back to peru with out the diagnosis!!! he was ready to return last month, but his father got sick, so they decide to stay a little longer to check on his fathers, doctors at mayo just said he had fibromialgia and vasculitis, well, since his father was having a check up, he run a hig fever and got really sick, thats when the doctor put him in lower dosis of steroids and did another bone marrow and another lymph node biopsy, and was positive, he is sooo sick right now, i thonk he is in his last days... i am soo much pain........i was wondering why would he had a lyme test positive?
i have also read that people that had epstein bar have a big risk of developing lymphoma, now i am thinking thats maybe what i had, we had the same exacts symtoms, the only diference is that he develop a major vasculitis, and i dont, at least like him... does anybody know storires of success with a stage 4 nhl? i would like to email him some, so his wife can read it to him and encourage him to keep fighting, please, i need some support, i feel devastated........ hugs

 
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Old 08-09-2006, 04:16 AM   #2
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Re: Really Bad News!!!

Oh Brid, that is such sad news.

I remember you telling us about your friend and the similarity of your symptoms. I suppose that the list of lyme symptoms is so long and varied that it overlaps with many other illnesses. That is probably why it is so difficult to diagnose.

I can't think why he would have got that positive result on the lyme test, unless of course he has lyme as well.

Please keep strong and try not to get too stressed out (probably impossible), and I sincerely hope that your friend and his family find the strength to fight this.

Love

Janet

 
Old 08-09-2006, 05:51 AM   #3
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Re: Really Bad News!!!

Brid sorry to hear about your friend....I am wondering if he has tested positive for lyme then why don't they have him on medication for it....I had a friend he supposdely has lymphnoma....and supposdely has had it for years...he is on medications for it....last I heard he was trying to find someone to test him for lyme....

Sweetie I am sending big hugs your way....

I went to Mayo also in Arizona....and what a joke...I found that the doctors there are just like going to a doctor in town....the only advantage is there they are all in the same area...except you have to wait days for appts...and have lots of money to stay in motels....With the swelling on my head...I told the doctor when I got it and about it swelling up and down and making me crazy....SHE SAYS DID YOU BUMP YOUR HEAD?........I knew right there that I didn't belong there.....yeah lady I bumped it 6 years ago and it hasn;t gone down since....she didn't listen to a word I said....anyway....I feel anyone going to Mayo is pretty much wasting their time....

sorry I went off on myself... Tell your friend to keep fighting....

HUGS TO YOU ALL!!!
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Old 08-09-2006, 05:21 PM   #4
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Re: Really Bad News!!!

thank you janet and jojo, still in shock, he also has bone marrow cancer....i am praying for him a lot, i really hope that a miracle happen, they do exist..i was reading articles saying that eptein barr can cause lymphoma...is really scary... specially when you lost a whole year and being missdiagnose...he could have saved his life if he had the correct diagnosis when everything started!is weid, because seems that lymphoma i cause by bacterias.. i am wondering if i might have that too and because taking doxy is covering a lot of symtoms, like fevers and swallen lymph nodes.. will ask my doctors, but... can you really trust them? thats the point..... thank you sooo much for your support, big hugs!

 
Old 08-09-2006, 06:19 PM   #5
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Re: Really Bad News!!!

Brid
I am so sorry for your friend. I will say a special prayer for him. I know this is hard for you to handle. But remember stress is not good. All you can do is be there for him. Pray for him. Pray that the doctors have the knowledge and can know how best to to help him. I know the Mayo is good. Maybe not for lyme, but my Aunt had her eyesight saved because of the Mayo. I hope they can do something for him.

And Jojo, I have a very sore spot on top of my head. And feel like I keep having bugs or something on me. Not a good feeling. Hope both of our heads get better.

Prayers....Marsha

Last edited by Pearlscale; 08-09-2006 at 06:21 PM.

 
Old 08-09-2006, 06:41 PM   #6
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Re: Really Bad News!!!

hi marsha, thank you!!! hope you feel better soon, i will pray for you, hugs

 
Old 08-11-2006, 07:24 AM   #7
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Re: Really Bad News!!!

oh brid, what sad news!

I remember you sharing with us about your friend. This is terrible. How sad for him and his family and friends.

He went so long without a daignosis. That is shameful.

If I were you I would also wonder if I had the same thing. The symptoms for different diseases do overlap.

I had so many tests - so many scary things I thought I had. If there is a way for you to be tested for NHL, go for it. If only to rule it out.

I am shocked that so many doctors ran so many tests and his cancer was never detected. The poor guy.

You are a good friend to be so supportive of his struggle to get answers and now that he has an answer, to be looking for information. I'm glad you are my friend too.

If you find anything in your research, please let us know.

And I completely relate to wondering how many doctors does a person have to see and explain the same symptoms over and over - to get a straight answer?

Prayers for peace and health to you and your friend.

 
Old 08-11-2006, 12:08 PM   #8
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Re: Really Bad News!!!

Im So Sorry To Hear About Your Friend...but I Do Have Good News!!
I Have Two Very Good Friends That Had That Same Type Of Cancer. One Of Them Was Not "supposed" To Live...but Guess What....they Both Fully Recovered. And You Could Never Tell In A Million Years That They Suffered The Way They Did. What He Needs From You Is Support. Please Let Him Know do Not Let The Cancer Take Overhis Attitude Makes All The Difference In The World. Most Of The Cancer Patience (and I Know Several Of Them) Do Not Want To Be Treated As Though They Are Sick...just As We Dont...treat Him As You Normally Would. Just Be There...be A Wonderful Friend That I Know You Are. He Can Overcome This!!! And Always Remember, There Is Power In Prayer....my Family And I Will Keep You And Yours In Our Prayers!

 
Old 08-11-2006, 09:45 PM   #9
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Re: Really Bad News!!!

hi 6 blues!!yes is terrible...........i went to see my doctor, which is his doctor too... because i was concern about him and about me having the same thing, he said that my syntoms were absolutly dofferent as him, that my rash is not like his, and he is not convern about me having nhl, but i still would like to have the biopsy, so i will have a chest cat scan and see from what lymph node..the thing about my friend was that he was taking really high dosis of corticoides, and doctors at mayo said that the corticoides were hiding the cancerous results from biopsys, even the forst biopsy he had at mayo showed indeterminate, so doctors over there decided to stop the corticoides and do it again,a nd bingo! thats when they found out the cancer, so iasked my doctor ehre if maybe doxy might be hidding some results and he said, no, that doxy is not an autoinmune suppressor, and i dont have the high fevers, and other clues that goes to lymphoma, but lets see... is terrible that you are only able to diagnose this terrible disease when you are in stage 4!!!why cant you find out when is in stage 1???????in the other hand, why the doctor here did so many biopsys while he was in corticoides? didnt he know that was an autoinmune suppressor?? i mean.... dont they learn that in medical school????? i send you a bigg hug!! and thanks for sharing that with me

 
Old 08-11-2006, 09:48 PM   #10
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Re: Really Bad News!!!

hi hiphod! nice meeting you!yes, i just spoke with him and told him i search on internet peolple who fully recover, he soud more positive then the other day... i hope he goes for bone marrow transplat, many peolple have recovered by doing that... and he has been a strong guy, i told him, you have been sooo strong for a whole year, that now that you have what you have, you need to keep strong, is the only way to beat it and you will.....i am really praying for that, thank you for your post, very encouraging, i send you a bug hug

 
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