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04/28/2012 02:19 PM

Brain Tumor

filfla4
Posts: 3
New Member

Hi, I'm new to this forum. I have been an ME patient for 19yrs. I have been thru the mill medically. 18 months ago I started being treated by a well-known ME doctor in Brussels. His treatment included a monthly course of antibiotics, high doses of VitB12, Nexavir, GcMAF, various stomach meds and vitamins/minerals, plus a very rigorous diet.

It was a tough regimen and after 5 months I had improved incredibly. Unfortunately, it did not last as a year ago, my 15yr old son was diagnosed with a brain tumor. (Low grade astrocytoma). This required pretty invasive surgery and it has been very tough to deal with. Needless to say, I pretty much abandoned my own treatment and drove myself into the ground.

Now I've been trying to get back on track with my own treatment and recently went back to Brussels for some blood work. I have now tested POSITIVE for Borrelia, whereas 18 months ago my test was negative. I am in the process of being retested in my own country (Malta) as my local physician will not treat until he does his own testing. It is going to be a long tough battle.

I believe I've had this illness for a very long time and have probably passed it on to my kids. I was wondering if anyone knows if Lyme is often associated with brain tumors? I'd appreciate any medical references anyone could refer me to?

Thanks!

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04/28/2012 08:12 PM
WiscLamLymie
WiscLamLymie  
Posts: 1455
Group Leader

Wow, I do not know about Lyme and brain tumors, but Tom Grier might. He is a microbiologist and VERY well-informed and well-researched. You can read more about him at www.wisconsinlyme.net. There is a whole tab devoted to him.

I understand how hard it is with kids. I gave Lyme + Co. to all of my children--3 beautiful and bright girls. And this is our reality.

Hugs and blessings to you.

Lauren


04/28/2012 10:12 PM
RavenLunatic
RavenLunatic  
Posts: 2673
Group Leader

I don't know if it is the LD that is associated with Brain Tumors or not, but my son who was born with LD & Co. has Tubular Sclerosis. I also have issues with my Hypothalamus, but no tumor.

04/29/2012 12:43 AM
Bettyg
 
Posts: 32241
VIP Member
I'm an Advocate

hi Wink

please edit and break up your long paragraphs into short uses using my posting guidelines below so we NEURO lyme folks will be able to comprehend/read your posts.

thanks for helping us help YOU Wink

bettyg, leader

Welcome to MD JUNCTION! I'm so glad you found us! You've come to the right place for education and support!

Private messages DELETED in 30 days!

ARCHIVE, upper right!

My WELCOME LETTER is posted at the top of SUPPORT FORUM in sticky pin full of good info and HYPERLINKS ready to be read.

http://www.mdjunction.com/forums/lyme-disease-support- forums/general-support/2356916-bettygs-welcome-letter-wgood- beginner-links-

The most important things are at the top; MUST READ and print off as mentioned there already to start your lyme/co-infection journey with us all.

The 1st things to do are:

• JOIN LYME BOARD;

• Post in LLMD REQUEST FORUM for a LYME LITERATE md; see my welcome letter and the INSTRUCTIONS there if you are SPECIALLY FROM CALIF. Where it's broken down into 8 NAMED AREAS.

• You'll need to give me my calif. NAMED area where you live in the areas shown there in SUBJECT LINE plus if it's for ADULT or a child; we need age of CHILD; some llmds have AGE restrictions.

OTHER STATES will show the SPECIFIC NAME OF THEIR STATE and closest, largest city to them in SUBJECT line plus adult or child; UNDER 21; we need their age!.

http://www.mdjunction.com/forums/lyme-disease-support- forums/llmd-info/Itemid=217/func=post/do=reply

• Also, I'll need the following info in your request post:

in your llmd request, please EDIT and add more info ok.

Are you UNDER AGE 21;; if yes, I need your age shown as some of our llmds have AGE RESTRICTIONS; thanks!

how long you've been sick

if you've tested for lyme/co-infections;

which labs doing work for which specific test, etc.

did you have western blot igm/igg done by igenex?

if yes, what were the POSITIVE & INDETERMINDED numbers; NOT negatives.

thanks for understanding; just EDIT your post. you can find all by going to left MY DISCUSSIONS, click on it.

after you add more, i'll send you names ok.

just send me a PRIVATE MESSAGE left side, giving me the direct link to come to here, and i'll send you the names ok big thanks.

Betty's suggested posting guidelines:

NO ALL CAPS POSTS; they are illegible to me/other neuro folks!

Many of members have neuro lyme, and it is hard to read long solid block text and be able to comprehend; example, me, 42 yrs. neuro chronic lyme, so we are UNABLE to comprehend and read. Thank you for helping us help YOU

please post in short paragraphs like you see below or look at a few other posts, but we neuro folks need them short.

1-2 sentences MAX per paragraph and hit ENTER TWICE to doublespace between each paragraph. We've lost our comprehension skills to read solid block text.

we neuros lose our train of thought if the sentence is broken up in the middle; so please keep an ENTIRE sentence together as ONE. hugs

For easier reading, please edit your post. You can break up your longer paragraphs into smaller paragraphs. Please hit

ENTER key twice after each paragraph.

Go to left hand corner; click edit send. Then go to bottom and click SUBSCRIBE TO THIS DISCUSSION.

Thank you for posting in a manner that makes it easier for all to read and help others.

Bettyg, llmd coordinator/group leader/Iowa activist


04/29/2012 01:13 AM
filfla4
Posts: 3
New Member

Thanks Lauren. I'll check that out!

04/30/2012 07:09 PM
WiscLamLymie
WiscLamLymie  
Posts: 1455
Group Leader

Raven, that's really interesting, as a friend of mine fro high school had "MS" (still won't even consider that she had Lyme) and her son has tuberous sclerosis! And very bad case of Autism as well. I wish I coudl say the right thing to get her to check into it more. I wish I wish I wish.

xoxo

Lauren


04/30/2012 07:15 PM
RavenLunatic
RavenLunatic  
Posts: 2673
Group Leader

Wisclam - here's the info you might need to tell your friend more...... I have also been DXed with MS & my son has autistic issues. (Asperger's) What a co-winky-dink, huh?

04/30/2012 07:18 PM
WiscLamLymie
WiscLamLymie  
Posts: 1455
Group Leader

Wow Raven. So sad that so many people out there are duped into these bogus dxs. I mean, I had an aunt who died from "MS" and I have a nephew who is autistic and could VERY well be from Lyme. Especially if my theory is right that my parents have Lyme and gave it to me that way... Not when I was 7. My siblings could have this. And pass it along to their own...

Oy. Such a HUGE can o' worms. Huge. I will be talking to her soon. I need to. Thanks Raven. You are a dear. <3


04/30/2012 07:29 PM
RavenLunatic
RavenLunatic  
Posts: 2673
Group Leader

WiscLam - I very easily could have been one of those people who got duped too. I was 1st. DXed with an auto-immune disorder due to a Positive ANA but no one could tell me which one I had. It wasn't until after I got DXed w/ LD & Co. that I found out I had MS.

BTW: I still don't know/believe that Bb causes MS. If that was the case, all people with LD & Co. would have MS. I do know that Mycoplasma Pneumonie & reactivated HHV-6 is always related with MS. Seeing as these 2 infections are/can be co-infections of LD. people seem to think it is caused by Bb. I would at least suggest thatyour friend gets tested for the 2 infections I just posted. Best wishes!!!


04/30/2012 08:09 PM
WiscLamLymie
WiscLamLymie  
Posts: 1455
Group Leader

Thank you for the specifics. Smile I truly appreciate it!!

Hope you are doing well Raven.

Lots of love,

Lauren

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