posted
I'm wondering if there is any relation with lyme and brain tumors. Looking around a little I didn't find much quantifiable info.
An abnormal MRI scan with multiple lesions (undisclosed #) and an area of tissue that "may" be a tumor but is more likely to be "balloon cells" - has me a bit concerned.
I don't have the MRI report in front of me, sorry for the layman's terms.
Also, if anyone can point me in the direction of a good neurologist (LL or Lyme friendly) in the New England area (specifically Eastern Massachusetts). PLEASE do send me a PM with the info.
We are a little bit in shock here and very nervous about these rsults.
Posts: 274 | From United States | Registered: Feb 2012
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Keebler
Honored Contributor (25K+ posts)
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posted
- What does your LLMD say about it? That would be the first expert I'd consult. Many LLMDs are very well versed in how to interpret your test.
Multiple lesions are very common with lyme & co. and often disappear or decrease with adequate treatment.
Still, if it might be a tumor, you'd still first want to talk to your LLMD about this. THEY may know the best doctors to suggest.
And, any other treatment protocols would have to be coordinated with lyme treatment & with liver support.
There are only about two LL neurologists in the U.S. but I hope you get that contact detail.
There may be other tests that could clear the picture. Maybe a SPECT scan or a CT scan - but your LLMD would be the best to first ask about this.
I know this must be very rough - and it may not mean much after all is said & done (hope so). Best of luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thanks for your response, Keebler. Our LLMD has recommended that we see a neurologist regarding the abnormal brain cells.
She has not recommended that we need to do additional testing - the MRI was compelling evidence enough, I believe.
It is her belief that the lesions are caused by the lyme, but the questionable portion is something that she recommended that we see a neurologist for.
She said that she only knew one LL Neurologist and they passed away in a tragic bicycle accident.
We discussed the complexities of interacting with a Neurologist with the lyme piece being part of the picture.
I'm foreshadowing, however I fear that the health of my family may be complicated and potentialy compromised by political agendas and uninformed individuals that have power and authority.
I agree, I'm hoping that this doesn't mean much after all is said and done. Staying positive.
Posts: 274 | From United States | Registered: Feb 2012
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poppy
Frequent Contributor (1K+ posts)
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posted
Sending you a private message.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
It seems surprising that your LLMD is not aware of the LL neuro at Columbia in New York. Hubby has not been to that doc -- when I tried to get him admitted to the 2nd opinion program there a couple of years ago they thought he was too sick for them to see!!!!!!!
Anyway -- they do not treat lyme patients, but supposedly offer a 2nd opinion type service. There is info on the lady neuro on the website. You should be able to make an appointment just with the neurologist without going through the entire 2nd opinion process.
I am aware of 2 other LLMD neuros. Hubby has been to both of them. Both specialize in IVIG. One may be helpful but the other I would avoid -- office is on Park Avenue in New York and ego matches that address.
The one who may be helpful has been interviewed from time to time and is on the staff at Yale. Dr K is in Orange, CT. The one to avoid (Dr Y)is on the staff at NYU and is one of the leaders of the New York city Lyme support group. He has a website and is supposedly recruiting patients for a study of lyme patients using SPECT scans I think.
The doc who died recently was very helpful to hubby but he had relocated from CT to California about a year ago so we could not follow-up with that doc.
Bea Seibert
Yes the brain lesions are very common. Hubby has 4 or 5. Depending on the radiologist his MRI reports say everything from possible Lyme to migraines to ischemia to normal for age (was 45 11 years ago when he first got sick) and I think there may even be another diagnosis or so.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Bea, thank you so much for your note. I appreciate that I have somewhere to start.
I'm a little surprised myself that my LLMD seems to be so out of the loop in this realm and didn't seem to know that the Dr. she mentioned had moved anyway. Makes me start thinking...
Posts: 274 | From United States | Registered: Feb 2012
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posted
I sent you some info also. Hope it all turns out OK!!
PS.. You would not HAVE TO see a LL neuro. You need someone who is used to identifying tumors, not Lyme.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i hope you get a LL neuro. i know of 2 ppl who had brain tumors operated on...it turned out to not be a tumor and the results-sied effects were not good. only do the surgery if you are sure. try aggressive abx first. and have you also had spect scan? good luck.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
We've been torn about the spect scan. The radiation.
Our LLMD continues to recommend it for me (I only have one lesion and cognitive symptoms) but for my DH (he had the abnormal MRI) she took it off the table.
So do you know what the Spect would it tell us? How would it continue to inform us?
Ipkayak, what did the 'tumors' turn out to be? I'm interested to hear more information. If you don't want to post it, will you send me a PM? I want to learn from others - that seems like all we can do at this point in time.
Posts: 274 | From United States | Registered: Feb 2012
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dbpei
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posted
I will PM you.
Posts: 2386 | From New England | Registered: Aug 2011
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
spect scan is more impt than mri when dealing with lyme...but it is really best to go to columbia hosp in nyc
plz work with them...or dr L in ny state
i will pm my phone # to you-hands too bad to type...many others can tell you how to contact this doc and hosp
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
As I decoded the MRI report I'm less worried about the multiple lesions (they stopped counting at 12, I guess).
I'm more worried about the area where they see a mass that cannot definitively be identified. They have identified it as:
(1) epilepsy (or a mass of tissue that id's epilepsy) (2) low-grade glioma
kayak - thanks for your phone number, I'll give you a ring. PM on it's way.
The action plan for now: - Get on IV antibiotics ASAP. (There was some conversation about waiting because of a few recreational activities we had planned)
- Find a neurologist who is sensitive to Lyme and make an appointment for them to review the MRI.
- Connect with Columbia University to see if we can get on their list for an appointment.
Thanks to everyone for their comments and suggestions. It's really wonderful to have a forum like this with so many knowledgeable individuals willing to help.
Posts: 274 | From United States | Registered: Feb 2012
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lpkayak
Honored Contributor (10K+ posts)
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posted
sounds good
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
For the mass, you could see a neurologist and just not talk about Lyme at all. Our LLMD actually used to suggest that. It can be tough though, because, as you say, trouble can result if the controversy comes up.
However, with a glioma involved, I would not delay, and any good neurologist could evaluate that. A gllioma is a tumor and would be of concern.
Balloon cells would have cause a lot of seizures from a young age, apparently. If "epilepsy" is on the report, perhaps that is what they are referring to. Do you have seizures?
Gliomas would also cause symptoms, so perhaps some symptoms that are being attributed to Lyme actually have this other cause. Just a thought.
MD's will pay no attention to the lesions. I always hear from doctors that most of their patients over a certain age have them. My report mentions small vessel disease, migraines or demyelinization as possible causes. MD's spent about 2 seconds on these lesions, and only because I asked.
So you could go to an MD who is good with tumors- maybe you could find one at an oncology center-? I really don't think the person needs to be LL for this targeted visit. Maybe delay antibiotics until you have seen the MD, so Lyme needn't even come up.
Bottom line: if it is "low grade" glioma, you have caught it early but time is of the essence and I think you should find a good neurologist asap, in this area of expertise, regardless of attitudes toward Lyme.
Being LL would be icing on the cake, but you need the cake itself asap.
Posts: 108 | From US | Registered: Apr 2012
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poppy
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posted
The problem is that infections like lyme and bartonella can produce something in the brain that looks like it needs surgery, only to find out afterwards that it was not cancer after all. Someone else above posted about this happening.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
I'm definitely concerned about this appearing to be a glioma to the MRI and it ultimately be lyme or bart or parasites.
My DH (his MRI) has cognitive symptoms (brain fog, word recall, slight shift in personality) and never had a seizure. We've been attributing it to the lyme.
Our MRI report says, could be attributed to lyme - no getting around it with the specialist. I found a top notch neuro that we will be seeing. But I'm hoping that there isn't an overcomplication with the lyme piece. I'm not sure how far that can go to create unnecessary chaos for our family.
My DH is very adamant about not wanting brain surgery. So, we take it day by day and keep researching and looking for pieces of information.
Posts: 274 | From United States | Registered: Feb 2012
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posted
Wow, the MRI report says it could be Lyme. That's very progressive of them! Are they saying this about the lesions, the possible glioma, or both?
Glad you have a good neuro.
I gave up a long time ago, trying to find a great neuro who is LL, and sometimes problems are so acute and urgent that we cannot focus on LL, but need an MD fast.
In a case like this, where surgery could happen for the wrong reason, it is even harder.
I understood the part about the needless surgery, but also assumed there was urgency.
Sometimes we don't even mention Lyme, to be honest. It depends.
The LL neuro at Columbia is very nice but awfully busy and hard to get care from.
Posts: 108 | From US | Registered: Apr 2012
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posted
Obviously, I think you need experts in the field to help make a determination of what they think they're seeing there.
In my case, I had brain surgery for what looked like a tumor in the pituitary area, and it wasn't. It turned out to be hyperplasia, a build-up of cells. Too bad they couldn't figure the difference out in the testing!
The surgeon declared me a medical mystery. And that was six years into the illness that no one knew I had.
Posts: 13155 | From San Francisco | Registered: May 2006
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posted
But often hyperplasia is treated with surgery. Did they remove yours or did they just close you up again?
I guess surgery is indicated for it when seizures are caused by the hyperplasia, so if you are one of the few who have hyperplasia but not seizures, maybe there was no need for surgery at all.
At any rate, it sounds like Yin Yang has hopes that the neuro is a good one. I am just curious because I have a kid with epilepsy who may someday need surgery as well.
Posts: 108 | From US | Registered: Apr 2012
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dbpei
Frequent Contributor (1K+ posts)
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posted
I think whenever there are lesions in the white or gray matter, the MRI report states lyme disease as being a possible cause. It did mine, but my neurologist ruled it out because of the subsequent Western Blot test I had by a local lab that came back negative.
Our testing standards are so flawed! I just learned, after digging up my old medical records, that in 2006, the summer of my mysterious flu like symptoms over a period of weeks, my PCP ordered an Elisa test followed by a western blot.
The Elisa apparently was positive, but because the WB came back negative, they ruled out lyme! It is so upsetting to think if I had been treated for lyme at the time, I might never have gotten so sick and I would still have good hearing with NO TINNITUS!
It must be so confusing to you with this latest development. I hope you can find a good LL neurologist or at least a lyme friendly one.
The brain spect scan might be very informative and help to put off any unnecessary surgery if the doctor is lyme literate and able to put it all together.
Best wishes and prayers sent your way.
Posts: 2386 | From New England | Registered: Aug 2011
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lpkayak
Honored Contributor (10K+ posts)
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posted
after my mri the radiolgist wrote it could be lyme.
the neurologist pa told me "no way" it was lyme...she had just gone to workshope with top lyme doc and he said if i had at least 3 weeks abx it could not be lyme.
honest...she told me with a straight face it wasnt lyme. she knew for sure.
i was dead pan...just shut up and walked out.
i do need to go back there for other reasons...barin injury...but so far my life is too complicated to deal with their stupidity...
they told me it must be plaque from my high lipids...it was the only explanation
so ppl---it is important to understand where they are comingfrom. i guess thay mean well...but they are robots...info in...info out. no one checks the info.
i had a friend have unneccesary brain surgery whe she was in her 30s ...she had two yound children and was a speech therapist...she came out of surgery with severly slurred speech and in a wheelchair
she has a wonderful husband and has continued to be a great mom...but cant work in her field
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
[QUOTE]Originally posted by pug7: [QB] But often hyperplasia is treated with surgery. Did they remove yours or did they just close you up again?
I guess surgery is indicated for it when seizures are caused by the hyperplasia, so if you are one of the few who have hyperplasia but not seizures, maybe there was no need for surgery at all.
No seizures here, just high prolactin count. The surgeon could not find a tumor so didn't do anything. We were obviously relieved at the time, but very puzzled.
When I finally found out, 20 years later, I sent him an email, saying medical mystery solved! Him, 5 minutes later: What? Me: Lyme disease. Him: We never knew about Lyme disease. Me: I know, but would you please tell your colleagues about it now?!
Posts: 13155 | From San Francisco | Registered: May 2006
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posted
Yes, so the MRI indicated that it could be due to Lyme. I think that the report was written like that because the MRI was ordered by my LL practitioner.
We were able to see the neurosurgeon. Who was phenomenal. Non judgmental and for the most part kept his opinion out of the conversation.
He has concerns about the abnormality that the MRI shows. He indicated that he believes it is a Glioma (tumor) and recommends a biopsy to find out more. As Ipkayak said, this is all they know. When you see something multiple times a day everything starts to become it.
He said there is an 80% chance it is a tumor, couldn't give any other type of info without a biopsy. The mass covers a fair amount of the right frontal lobe.
I questioned him on whether he thought that the Lyme disease might possibly be presenting this abnormality on the MRI (the image is SO archaic, I don't know how anyone knows anything). He actually said that it could, but he doesn't have any way of knowing for sure. Felt like a win for all of us struggling with Lyme, honestly.
My husband doesnt want any type of procedure on his brain. I certainly understand his concern. He has opted to wait and have the scan again in a couple of months to see if there is any change.
The good news is that this seems to have been caught pretty early. If we didn't have a Lyme diagnosis before this happened, I think I'd be way more shaken up.
He is starting on IV antibiotics next week (hopefully) and I'm keeping my fingers crossed that 1.5 months of IV antibiotics might visibly shrink the area.
What happens if it grows or stays the same...I just don't want to think about right this moment.
We are also going to start parasite cleanse for good measure as it has been indicated by people here that parasites could also present themselves like this in the brain.
Dbpei, how frustrating for you to find out that you tested positive and were never notified or treated properly. There are some seriously flawed processes and procedures that are a major concern for all of us.
It is beyond me how human beings can act without critically thinking about how what they do or chose not to do could impact other people. Where has all of the decency gone? Rant over Posts: 274 | From United States | Registered: Feb 2012
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lpkayak
Honored Contributor (10K+ posts)
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posted
from what i have seen in my life first hand you made a good decision...push treatment...dont give up
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
YinYang -
I'm with your husband. And I think IV abx is the BEST thing he could possibly do right now!
My Mom has neuro Lyme - presented with "white lesions" on her frontal lobe in a CAT - the radiologist diagnosed "possible MS" but a spinal tap, done YEARS later proved him wrong. Lyme was in her cerebrospinal fluid, and the neuro who ordered the tap thought she did so just to "rule out" Lyme. Boy, was she surprised!
Please see this IMPORTANT study, done by an ILADs doctor, and published just last September:
Benefit of intravenous antibiotic therapy in patients referred for treatment of neurologic Lyme disease
RESULTS: For cognition, fatigue, and myalgias, the greatest improvement occurred in patients on the longest courses of treatment (25�52 weeks) with odds ratios (OR) for improvement .... In contrast, arthralgias were only significantly improved during the initial 1�4 weeks of therapy ..., and the beneficial effect of longer treatment did not reach statistical significance for this symptom.
DISCUSSION:
In conclusion prolonged intravenous antibiotic therapy is associated with improved cognition, fatigue and myalgias in patients referred for treatment of neurologic Lyme disease. In contrast, improvement in arthralgias did not persist after 1�4 weeks of therapy. Treatment for 25�52 weeks may be necessary to obtain significant symptomatic improvement in patients with neurologic Lyme disease
---- So I would warn you, as in my mother's case (big mistake!) ... don't let them remove the PICC line after the 1.5 mos., BEFORE they retest him for Lyme.
Dr. S says that neuro Lyme patients don't even begin to feel improvement until at least 4 mos. into IV treatment. I have loads more info on neuro lyme if you want it... but this study, after 5+ years of personal research, is the most significant.
Good luck! And may God guide and Bless you both!
Posts: 1432 | From New Jersey | Registered: Jan 2012
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posted
Ipkayak, thanks for the info you shared with me earlier. It was certainly a factor in our decision making process.
AuntyLynn, thanks for the links to the study. I know that our ll peacticioner is recommending 4 months of IV ABX to start. Our insurance only covers 28 days, I'm told. Any way around it with an abnormal MRI? Other methods to get treatment covered.
Maybe a topic for a new thread...
At the end of the day, I'd spend anything to make this better. Realistically, with four of us in treatment and paying for much of it out of pocket we are starting to experience the financial issues many with Lyme confront.
Posts: 274 | From United States | Registered: Feb 2012
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Of course I would appeal any insurance decision regarding length of treatment, but the reality is that under the current IDSA guidelines it is very unlikely you would get more than 28 days covered. The old guidelines did at least allow 2 months for neuroborreliosis. The MRI is a nondefinitive test for lyme so that will not really help.
If you had a brain SPECT and that was abnormal and used the term vasculitis then that might be helpful -- don't know what the coverage is for vasculitis. Hubby did not get his SPECT scan until several years into treatment.
Your best bet would be if you have a coinfection. You might get another month covered for each coinfection -- of course that depends on the guidelines for those coinfections.
But what many do is get your LLMD to train you to administer the IV's yourself and skip the expense of the home health nurse. It is really not that hard to mix the meds and change the dressing.
Hubby is lucky in that his insurance covers all meds -- oral and IV the same -- 60/40 coverage but he does have a $5000 annual cap which we usually exceed. That is something else to find out from your insurance company. We order IV zithromax and other IV meds from Rite Aid and then get the bags and tubing mailorder from Medaus.
But then again it depends on the LLMD -- some will only prescribe IV if you use a home health nurse or others will require weekly phone consults while on IV (which is of course not covered by insurance) or there are a few like hubby's LLMD who are much more understanding and cost conscious and allow us to do everything ourselves as long as we do weekly bloodwork and send biweeekly written status updates we continue with monthly appointments (in person or by phone as health allows).
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
I am curious about this situation because I also have abnormalities on my brain MRI.
What do you mean about the image being "archaic"?
I could see that lesions could be Lyme, but the larger mass, that might be a glioma, sounds iffy in terms of Lyme. Do you think the MD said it "could be Lyme" as a throwaway comment, that wasn't really based on any specific knowledge? I mean, with a Lyme diagnosis on record, maybe he wanted to cover his bases.
I can understand the plan to treat for Lyme aggressively and then check to see if the tumor (calling it that, may not be) size went down.
However, with something as serious as a glioma, I personally wouldn't want to wait two months. I would at least get a biopsy. I feel like considering Lyme is smart, but also a gamble.
A person who absolutely does not want surgery can decide against it even for a serious malignant tumor. I mean, it is up to your husband. But has the MD agreed to his plan or is the MD urging biopsy more quickly?
Posts: 108 | From US | Registered: Apr 2012
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posted
Hi pug. I'm sorry to hear that your brain MRI was abnormal, too. It's tough news to hear. Was it lesions or a Glioma or something else? Have you seen a neurologist or neurosurgeon? Do you have other experiences with brain tumors?
I'm not worried about the lesions at all. For us, the fact that there are so many makes a stronger case for long term IV antibiotics for our LL practitioner. Those don't really have any major issues associated with them. As far as I know. But, I'm no expert!
The larger mass, which is what the neurosurgeon showed us is concerning. The image is archaic in the sense that it is very subtle and really nondescript shading difference. It certainly wouldn't definitively tell you whether it was something specific. Which is, of course, why the neurosurgeon recommends biopsy to find out what the tissue is.
To be fair, we were all over the board, he felt strongly that it was a Glioma however he also said there is a chance the my husband had this his whole life and it's perfectly fine.
I'd have to go back and listen to the recording of the session to be certain what the neuro felt about lyme presenting itself that way. I was just relieved that it wasn't disregarded.
I agree that it is a gamble. Neuro isn't pushing too hard for biopsy and seemed to accept the wait and see approach. I'm certainly hopeful, but nervous. Really, though, it's all kind of a gamble. A brain tissue biopsy isn't without it's risks.
Right now, my husband isn't interested whatsoever in a procedure on his brain. We have been given a gift of finding this fairly early (or so we are told) so hopefully we are taking a gamble that will pay off in the end.
Posts: 274 | From United States | Registered: Feb 2012
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My father died of a brain tumor. He did not have lyme. His treatment was surgery and radiation and was not successful. In fact, we found out later that it was probably useless to have done this to him.
So, if the prognosis for such tumors is not good and they aren't sure what this is, seems like treating the lyme (and bartonella if he has it) would be the sensible thing to do. But treat long enough.
It was interesting to read this in the wiki piece:
"Most glioblastomas are infected with cytomegalovirus, however the significance of this is not known"
So another possible link of an infectious agent to cancer, like H. pylori and stomach cancer.
Will keep our fingers crossed for you, hoping this is due to tickborne diseases and will respond to treatment.
Posts: 2888 | From USA | Registered: Mar 2004
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I would trust the new spect scans a whole lot more than MRI. IMO MRI are practically worthless for lyme. SPECT Brain Imaging in Chronic Lyme Disease
Donta, Sam T. MD, Noto, Richard B. MD, Vento, John A. MD Clinical Nuclear Medicine, September 2012, Volume 37, Issue 9, e219-e222.
Nuclear Thyroid scans were thought all this time to be showing normal thyroid tissue in nuclear scans...They are wrong. It does NOT show up normal thyroid tissue. It shows diseased thyroid tissue and they have been lying all along. Hashimoto's, and all the other stupids are not syndromes they are infections.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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