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» LymeNet Flash » Questions and Discussion » Medical Questions » MRI results lyme or not lyme related?

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Author Topic: MRI results lyme or not lyme related?
chopper
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I had a recent MRI show the following results:
1) White matter lesion, left frontral subcortex, indeterminate. Differential considerations include complicated migraine, microvascular disease, or less likely an early manifestation of Lyme disease, demyelinating disease, vasculitis, or collagen vascular disease..
2) Ovoid 6mm cyst, and left corona radiata, stable when compared to the prior MRI, This is consistent with a neuroglial cyst.
3) Mucus retention cyst, inferior right maxillary sinus.

The MRI was done because I am complaining of severe headaches that have reappeared after being off of abx for awhile, and since September 2009 left eyeball pain/pressure that sometimes accompanies a headache and sometimes appears by itself. I also started having pelvic discomfort in September 2009 and in March 2010 was diagnosed with an uncertain type of ovarian cyst that is being monitored. I also suffer from fatigue.

The neurologist reviewed the MRI and says I have migraines and handed my prescriptions for Elavil, Naproxin and Maxalt. I questioned if she thought there was any possbility it was related to an ongoing or relapsing Lyme infection since I was diagnosed with Lyme in 1996 and again in 2002, both times by tick bite and erythma migrans rash and treated with oral abx for 3 weeks. Never felt well after 2002 diagnosis and went on to fight for several years to be retreated, which I eventually was with 4 weeks IV Rochephin and then later oral Z-Max for about 4 mounths. Many of the varied problems I was having cleared up and so far have not returned, but severe headaches are again present frequently and in different types, as well as the newly found ovarian cysts and #1 and #3 listed above for the MRI. The other finding on the MRI - #2 was found in 2003 after my second bought of Lyme. I mentioned to the neurologist that I did not understand why the headaches seem to be less frequent and less intense when on an antibiotic and was she sure the MRI findings aren't linked to Lyme. I read that white matter lesion are often noted in Lyme patients and cysts can be infected, and wondered if mine could be infected with Lyme spirochetes. She really dismissed my concerns about Lyme and said she did not beleive it is at all related to Lyme since my past blood tests and spinal taps were CDC negative for Lyme and I was treated early. She chalks up the white matter and cysts to things many people experience and they get older (I am in my mid 40's). I am waiting for some Lyme related blood tests done 3 weeks ago (should have results this Thursday), but if they come back negative for Lyme, the only thing the neurologist will consider in addition to her already prescribed treatment is an MRA and blood tests for ANA, Ferretin, Folic Acid, Lead, Rheumatoid Factor, TSH, T4 free and Vitamin B-12 (in the past all these tests cam back normal. She wants the blood tests to check for blood flow disorders since I mentioned to her that a deaf student of mine looked at me one day and said that my eyes looked different, that one eye's pupil was big while the other was little(I had a headache with eyeball pain that day).

What do you all think? Related not related to Lyme? What would you do? I am being told to drop the obsession/insistance on Lyme disease relation. I want to but, I just can't. I just keep having ths gut feeling the things I am experiencing are related to a persistent Lyme infection. Sometimes I think people feel so strongly about something for a reason. What to do, where to go? Any suggestions from others with the same experienc? I am so frustrated!!! Sometimes I think I am nuts and should throw in the towel on this issue and just take what comes, but them others time well that just isn't the case.

Posts: 35 | From Reading, Pennsylvania | Registered: Mar 2010  |  IP: Logged | Report this post to a Moderator
MorningSong
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Chopper,
I dont think your nuts or obsessed with this possibly being related to Lyme or co-infection.

I too have a 6mm cyst shown on both MRI and CT Scan. My Lyme Literate doctor also states one pupil is slightly larger than the other. He believes this is due to Lyme in the brain.

Dont throw in the towel. I encourage you, if you have not already done so, go to the "Seeking Doctor" section to find a Lyme Literate doctor near you. There have been people with Lyme, who with treatment, have had their white lesions decrease or go away.

I hope this encourages you. All that you are experiencing could very well be Lyme.

Posts: 515 | From In His Loving Care | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
Carol in PA
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Chopper,
Well I could look at your history and your symptoms and say yes, that looks like Lyme involvement.
But I'm not qualified to diagnose disease.

If the neurologist doesn't have the Lyme knowledge, she won't see the connections between Lyme and what's happening to you now.
She will do her best to reassure you that Lyme is not involved.

Don't push the subject with her.
You won't get anywhere.

I have not had the eyeball pain, but I do have headaches and migraines.
Lyme causes inflammation and hypercoagulation.
Inflammation and hypercoagulation can cause headaches.

There are things you can do yourself to reduce inflammation and hypercoagulation.
Antioxidants
Magnesium
Fish oil
Systemic enzymes, such as Wobenzym

Using these measures, I have been able to reduce my constant splitting headache to a low grade headache.

Lyme does something that messes up the endocrine glands, so the ovarian cysts may be related to the disease.
I doubt that you will find any gynecologist who agrees with this though.

Investigate things that will reduce inflammation.

Carol

Posts: 6945 | From Lancaster, PA | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
dmc
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I had migraines for years that were attributed to "MS". Guess what...I have/had Lyme. I can honestly say I can't remember the last headache I've had. hmmm, Think it was over a year ago.


My advise is "dump that neuro find a LLMD".

Goods luck & hope you get some migraine/headache relief.

Posts: 2675 | From ct, usa | Registered: Jan 2004  |  IP: Logged | Report this post to a Moderator
canefan17
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I vote... Of Course it's Lyme

: )

Posts: 5394 | From Houston, Tx | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
WildCondor
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White matter lesions can be Lyme for sure. I had them on the frontal lobe (which doctors told me was MS) and they went away with treatment.
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chopper
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Morning Song Wild Condor

Thanks for your info. Yes I was aware that Lyme can cause white lession similiar to MS and often mistaken for it that do go away when treated with abx per research done by DR. FA at Columbia University. I saw Dr. F in his NYC office a few years ago as I was sick of seeing local neurologist that would tell me Lyme is not their area of expertise and infectious disease doctors that would tell me headaches where not their area of expertise when I felt the two were related. At the time my MRI did not show the white lessions, but it did show a lacunar infarct in the basal ganglia area, and he mentioned inflammation from Lyme could have caused it, especially since I had no other risk factors for stroke. He recommended I be put back on oral abx for several months. I was, and did pretty well, but after being off them awhile, I again am struggling with headaches, fatigue and weird eyeball pain. I would love to go see Dr. Fa about this again, but I am broke and he does not accept insurance, nor actually treat, but rather makes recommendations for treatment.

I will be seeing Dr. S. in West Chester Thursday. I plan on showing him the MRI results. Maybe he will treat and repeat the MRI later to see if the lession go away, decrese.

Wild Condor I assume yours went away with abx treatment. If that is correct about how long did it take?

Posts: 35 | From Reading, Pennsylvania | Registered: Mar 2010  |  IP: Logged | Report this post to a Moderator
chopper
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Carol in PA

Like you said drop the issue with the neurologist. I did as I could see the conversation was going nowhere, that the neurologist was closed minded to Lyme being related to/causing my headaches. She had no comments as to why the headaches decrease in both frequency and intensity when on abx, and just insisted that lyme doesn't present with just headaches and no positive blood or spinal tests. When I questioned the white matter lesions and the fact that they weren't on the MRI from a few years ago, her explanation was calmly that as people age, lots of people get them and it is just an incidental finding. I politely took her prescriptions for Elavil, naproxin, and Maxalt, agreed to have blood tests and an MRA done,see her in six weeks and left the office. Will I actually take the meds, I doubt it, as I don't think I truly have a migraine condition in itself, but rather lyme infection causing the migraine like headaches. I also was never open to taking the antidepressent every day, as I wonder about their side effects and don't think you can just stop taking them. Besides I am not depressed, just frustrated by headaches that seem to go away or are easily managed when I am on an ABX.

Where are the doctors that understand both Lyme and neurological issues? That is what I need.

Posts: 35 | From Reading, Pennsylvania | Registered: Mar 2010  |  IP: Logged | Report this post to a Moderator
chopper
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dmc

What treatment protocol did you use that seems to have made your headaches dissappear?

I can handle having a few headaches that are just slightly there when you treat them with over the counter meds, but what I am currently experiencing is nothing like that. When these headaches flair, I try taking the meds prescribed for migraines, but many times they don't seem to work( I am not convinced they are truly migraines as I never had these type of headaches until contracting Lyme), and I find my self just literally praying for the pain to subside. I often tell my daughter and husband I wish I was a Barbie doll and could just take my head off and walk around without it or change heads, as without the head I can function. We laugh about it as you have to keep some humor in this whole situation, but it really isn't a funny matter. Recently, I even began thinking about how people cut themselves to take away emotional pain. I guess the pain of the cut takes away feeling the other pain and wonder if this would work, but then I catch myself and say don't do anything crazy this headache will eventually go away after several hours/days just like before. But gosh the pain and inability to do things I want to during these headaches brings me to tears and insane thoughts.

Posts: 35 | From Reading, Pennsylvania | Registered: Mar 2010  |  IP: Logged | Report this post to a Moderator
chopper
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Carol in PA

I do take some supplements for inflammation. I already take fish oil and something called "Migrasolve" which combines B2, Petadolex/purple butterbur and Parsley oil.

On the ob/gyn issue. My ob/gyn is really nice. She doesn't appear to know alot about lyme, but she doesn't discredit my concerns about it either. She also is willing to send the cyst to be tested for Lyme if and when I decide to have it removed surgically. I am gathering information for her to contact two ob/gyn's, one in CA and one in TX that in the past found Lyme sprirochetes in ovarian cyst tissue removed from their patients. This is kind of one of my last hopes to find the bacteria in my system to try and prove I should be treated with abx further for Lyme and then maybe things will improve for me.
I feel like I have such a bizarre case. I know I was bit by ticks twice and developed the classic bullseye rash was diagnosed clinically with Lyme, but never had a Western Blot come back CDC positive for Lyme, nor have they found the Lyme bacteria in my blood or spinal fluid, but a C6 Lyme Peptide came back repeatedly high for antibody response (2.97, 2.67). There was no question in my PCP's mind that I had Lyme when he saw me with the bullseye rash and other symptoms, but yet the Lyme tests say I am negetive for it. I believe I have a strain of this disease that they are not testing for or are not yet aware exists and perhaps that is why I keep getting a return of symptoms, but always CDC negative test results. All I know, is that whatever I have, it seems to respond to oral abx better than anything else. Why are so many doctors so reluctant to put me back on them? They have no other verifiable explanation to why I feel ill, just vague things, chronic fatigue, chronic pain, migraines???

Posts: 35 | From Reading, Pennsylvania | Registered: Mar 2010  |  IP: Logged | Report this post to a Moderator
seekhelp
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They are in MA. PM Tracy9. She sees one.

quote:
Originally posted by chopper:
Carol in PA

Where are the doctors that understand both Lyme and neurological issues? That is what I need.


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Carol in PA
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quote:
Originally posted by chopper:

I politely took her prescriptions for Elavil, naproxin, and Maxalt...
Will I actually take the meds, I doubt it...
Besides I am not depressed, just frustrated by headaches...

You may find that the antidepressant will reduce the headaches, at least when the dose is high enough.
It helped me, and also reduced the body pain.

Systemic enzymes helped the most.
Carol

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Rumigirl
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There are two LL neurologists in CT. PM me if you want the info.

For Pet'e's sake, you need an LLMD again! I don't think a good one would be reluctant to put you back on abx. If you need a referral, ask here in the Find a Doctor section. Actually, one of the above neurologists some people see as an LLMD.

And while you are getting a dr and starting to get well again, the meds the neurologist gave you can help with the pain. Why suffer so much, when you can (and should) take something for the pain. If pain goes on too long, it can become more difficult to stop.

Magnesium is really helpful, too, esp transdermal magnesium, as in "magnesium oil", available on the internet.

The good news is that abx got rid of your headaches before, so it should again. But you may need to stay on treatment longer, to totally eradicate it. Plus, deal with co-infections.

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chopper
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To all:

I finally just recently went to see a doctor only an hour away from my home, and to my shock my blood tests came back CDC positive for LYME. Halleluea!!! I showed the doctor the MRI results and shared what the neurologist said to me. He totally disagrees with the neurologist, has started me on oral abx (didn't want IV during the summer as I have a cruise and other trips planned), scheduled follow up appointments and mentioned that we may need to switch to IV abx depending on response because of the brain involvement as reflected on the MRI. My course of treatment is not written in stone, but rather will depend on my response. Finally I think I have someone that understands what is causing my headaches, fatigue, eyepain and other weird things that come and go. The DR. is even in my insurance plan which is a big plus. I am only on the abx for two days now, but so far no excrutiating headache and I have even noticed a remarked increase in energy. So as of now, I don't think I will need the daily antidepressant. This is exactly how I felt before when on abx. There was little need for other meds when I was on the abx. The abx seemed to clear up symptoms that nothing else did, but no doctors wanted to believe me. They said it was a placebo effect and that my LYme was treated effectively and without positive blood test results for LYMe(they wouldn't even order the blood tests again), I was sufferring from something else but they couldn't find what. Guess what, they were wrong, I knew my body better than them all along. Whether I am still sufferring from the Lyme I contracted back in 2002 or a newly acquired infection starting this past September when symptoms started to flair again is unknown, but at least I have blood tests saying I have Lyme and am now being treated for it. Only wish I would have been treated sooner as maybe that would have prevented the LYme effecting the pain nerves in the brain. What a fight though!! What if I had just shut my mouth about Lyme like I was told to do so many times??? I believe I would have gotten worse and worse.

Posts: 35 | From Reading, Pennsylvania | Registered: Mar 2010  |  IP: Logged | Report this post to a Moderator
jwick25
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Hi everyone,

Stupid question, but what exactly are white lesions? How do they appear on MRI images?

I have a follow up MRI in a weeek and am wondering if there will be a change in what they found over a year ago.

I am managing a flare and am getting nasty headaches that last days. I am scared what this could mean. It feels like my brain is swelling and pressing against my skull...not fun.

I have Lyme/Bartonella and hope that the headaches are simply caused by one or both.

CHOPPER: Glad to see that you got some official answers! Congrats! I will gladly join you on your cruise...lol! I haven't sailed since 2009.

All the best!

Posts: 711 | From Bucks County, PA | Registered: Apr 2008  |  IP: Logged | Report this post to a Moderator
chopper
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I will attempt to explain the white lesions on an MRI. Normally on an MRI certain areas of the brain appear as a greyish color when the tissue is normal, when it appears brighter in color or as we have been described "white lesions", it is usually indicative of some type inflamation going on in the brain and deterioration of the sheet covering the nerve fibers also know as the myelination. The way it is explained to me is that the white color lesions can come from many things including aging, viruses, infections, autoimmune diseases like MS and ALS, traumatic brain injury, etc. In patients that test positive for Lyme it is very likely being caused by the lyme spirochetes either causing inflamation in the brain due to ongoing infection or inflamation being caused by Lyme setting off an autoimmune reaction after the infection is gone that still causes inflamation. The interesting thing in Lyme is that when treated with antibiotics the lesions either disappear, diminish or don't increase. This is reported as the case not only by individuals on this site, but also by brain imaging studies conducted at Columbia University's Lyme research center. In other disease/conditions the white lesions more often persist or increase over time. The minor lesions can cause no noticable problems, but if they continue to increase then usually nerve and muscle related problems start to appear or get worse.
I am not a medical professional, but I do a lot of research on my own, and ask a lot of questions to doctors, nurses, and researchers.

The description of you headaches seems a lot like mine. They don't really fit the migraine, stabbing/trobbing pattern. I often describe mine to doctors as a balloon inside my head that feels like it just keeps expanding and expanding and waiting to explode. Sound familiar?

I only tested positive for Lyme, not coininfections. I truly believe my headaches are caused by Lyme as they seem to diminish in frequencies and severity when I am on an abx. I wish you luck finding their cause and treating them.

Join me on the cruise? Gosh everyone wants to join me!! I can only fit so many people in my suitcase and cabin, unless of course you are a "flat Stanley". Anyone familiar with "flat Stanley" from their childrens elementary school social studies assignments? I am really looking forward to the cruise. I just hope now that I am being treated for the Lyme I don't have a flare of symptoms while on that vacation.l

Posts: 35 | From Reading, Pennsylvania | Registered: Mar 2010  |  IP: Logged | Report this post to a Moderator
   

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