posted
First time posting: my husband has chronic Lyme, diagnosed in 1999 after 2 years of trying to figure out what was wrong.
Two months ago he had a pre-op chest x-ray done for sleep apnea surgery.
It was suspicious. Surgery was cxld. He's had consults with 5 drs, a PET, MRI,lung biopsy, lymph node biopsy.
Lung biopsy was positive for cancer: 2 of the 4 lymph nodes were not. . The drs are amazed it was found in this early stage.
It's been 10 weeks and a plan of action has yet to be determined. Frustrating, but we both have faith.
code:
Brain MRI showed activity ...4 drs here said cancer ..went to Boston for gamma knife radiation consult, neuro specialist there said he didn't see evidence of cancer!!
A repeat MRI was done Fri, so no results yet. This spot was not on the MRI he had 7 yrs ago.
My question may sound strange, but i know that Lyme doesn't go by the book and i feel most dr's i've encountered are clueless, even tho we live in an area where the Lyme rate is high.
I know one cycle of spirocyte life involves invading tissue .... is there any evidence of this showing up, say on an MRI ....
the dr's seem baffled by this spot on the MRI and i would like to go to the next appt with some facts to back up my suspicion.
I was a med technologist for 30 yrs, but this lyme journey has really opened my eyes to a whole other aspect of the medical profession, mostly frustrating at best !
I would appreciate any feedback. Thanks for being here ! rcjc
[ 10. November 2008, 06:55 AM: Message edited by: rcjc ]
Posts: 1 | From cape cod ma | Registered: Nov 2008
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
It is hard to say from the info you have given. But here is some background info.
On the bad side lung cancer metastasis is common in the brain. Brian tumors are rather easy to see on an MRI in most cases, especially if contrast is used.
On good side, yes lyme can cause brain lesions. These are typically the "white spot" MRI lesions that are common in normal people as well. The ones hat I have seen that are severe, the "white spot" can cover a fairly large area. This is quite different in appearance than tumors, which are typically punctate and often cause a visible displacement of the brain tissue.
On top of all this there are other infections that can cause lesions that look like tumors on an MRI. It is possible that there might have been a co-infection in the tick that caused permanent scaring in the brain.
ALSO INVESTIGATE TB as it can cause both lung and brain scaring.
The bottom line is that you need to have someone read the MRI's that knows what they are doing. If no one can provide a definative interpretation of the images, get copies of the reports and films and send them to a reading service. If you PM me I can give you the name of ones that i know of.
If you do the MRI again ask the technician (or tell him/her if need be) you want at least T1, T2, contrast and FLAIR images.(these are the standard screening sequences) Also bring the previous films if you have them. You might also ask him/her who can do MRspectroscopy. MR spect can do a chemical analysis of the spot of the brain in question and is very useful in undestanding what the spot acutually is.
As a final note, If the lung cancer is confirmed ,if it were me I would get a whole body PET-CT done ASAP (not just a regular PET). This test is very very useful for detection of metastasis and can be extremely useful in planing treatment.
Posts: 1184 | From north america | Registered: Feb 2003
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bettyg
Unregistered
posted
rc, sorry having to scroll on by since i can't read solid block post paragraphs.
could you break this up using below guidelines please, and then other neuro folks will stop, read, and reply to your post ok? thanks xox
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Dr. Burrascano's most recent "Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @ http://www.ilads.org/burrascano_0905.html suggests that you discuss with your doctor continuing treatment until you are symptom free for 2 months.
please see BettyG's newbie package info on the link below; click on link at bottom of my package. Check it out as time permits for you! @ http://tinyurl.com/58eyou
Fyi: we have over 1000 viewers daily; 200 - 400 posting/replying; so specific titles get our time/replies. non-specific ones, i sob, scroll on by!
Also, please be very specific in the subject line what you will be discussing so more people will be able to assist you.
***************
please go to my newbie links, copy the entire thing, and then print this off....
financial burdens compiled by melanie reber pages 74 - 92; outstanding info there.
also in my table of contents, for FINANCIAL BURDENS, i believe there are a few more general comments there without links!! print that off too as it's newer info from members thru their own personal, tragic experiences. thoughts and prayers headed your way..
POSTING GUIDELINES
When you post or reply, please break up your solid, continuous block text welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``THREE`` after each paragraph; we need that space for comprehension.
if you are NOT a wordy person, you can do 2 or 3 total ok. do this for your entire post.
NOTE: you do NOT have to use "", just show the name of person you are responding to, and then type your comment.
IF you need to use "", PLEASE DELETE "BOLD" CODES so it's regular type text we read vs. the DARK, HARSH/PAINFUL BOLDING.
specifically, delete the first 4 characters of 2ND LINE of a ""
[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me.
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bettyg
Unregistered
posted
forgot to say also,
please UPDATE MY PROFILE and go to bottom where it asks you about ENABLING PRIVATE MESSAGE, CHANGE TO YES.
this is how we send lyme literate md info plus other things that can NOT be posted on public board.
after showing yes, click update or send button; thanks!
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adamm
Unregistered
posted
The most common MRI finding when TBI's are present is
demyelination (as is seen in the scans of MS patients).
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
where is the spot, how large is it and which sequence was it on? Did the PET show anything?
Posts: 1184 | From north america | Registered: Feb 2003
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bettyg
Unregistered
posted
rc,
i'm so sorry for what i just read about your husband's lung cancer.
i skimmed my newbie links and found this for you hoping it might help...
BRAIN IMAGING MRI/SPECT MS, LYME , COLUMBIA UNIV 07
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
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welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.![[Wink]](wink.gif)
otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me.
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