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09/06/2008 08:44 PM

Lyme and Brain lesions??

jennyC
jennyC  
Posts: 93
Member

I have been on a long journey, over a year now. Possibly diagnosed with MS, but recently saw a Dr who tested me again for Lyme. The test was positive. I have so many questions after trying to get used to the idea that I could have MS and now have been told lyme. I have brain lesions on my MRI. Does anyone with lyme have MR with lesions- I would really like to talk to someone with this similar symptom. I do have multiple other symptoms.........They never really go away. they just rotate around and get worse. I was told that with ms you usually have symptoms then they go awy in remission. Mine do not leave. I have had two rounds of solumedrol (1 gram) for 3days each time. could not tell any difference. I started to fear the worst that i may be progressive MS. My neurologist I have seen all want to confirm with a spinal tap- i have refused this for over a year now> I am tired of the testing - the uncertainty and - have spoke to others with lyme but noone with the lesions? Is this really possible? Lyme and Lesions??
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09/07/2008 12:44 AM
grayshockley
 
Posts: 51
Member

jennyC wrote:I started to fear the worst that i may be progressive MS. My neurologist I have seen all want to confirm with a spinal tap- i have refused this for over a year now> I am tired of the testing - the uncertainty and - have spoke to others with lyme but noone with the lesions? Is this really possible? Lyme and Lesions??

I've had some MS implications when I first started having "problems".

As far as "lumbar punctures" (the medical name for "spinal taps"Wink go, I've had thirteen of them (for two completely different reasons): 7 the first time and six the latter.

Honestly, I would / much / rather get a spinal tap than go to a dentist.

What I understand to be the true and excruciating pain that one hears about is the headache - a horrible, horrible headache - caused by getting up from the bed or even sitting or standing) before how long the doctor said stay flat on your back after the puncture.

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09/07/2008 02:15 AM
shortangle2

JennyC,

I have lyme and brain leisons. Over a period of a few years, they have improved, they're smaller now. I know a number of people for whom this is true. An MS diagnosis is another one of those "everything else has been excluded" diagnoses.

I've also had a spinal tap, which didn't go well due to the skill of the doctor, but I also found out after the fact that PCR tests for lyme are fairly unreliable. Your spinal fluid is not where Bb hangs out so your test may be positive or not.

In my case, my pcr was negative but I'd been CDC positive from the first time I was tested for lyme so it ended up meaning little.

This is only my experience. You need to make your own decision based on what you think is best for you but the fact that you have a positive blood test is all you need. False positives are thought to be very rare with the WB.

Good luck.

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01/28/2009 12:40 PM
canucklymie
Canuck  
Posts: 1674
Senior Member

My MRI has the lesions. A very experienced neurosurgeon just brushed it off saying 'oh it was a migraine you had during the test'

There are some theories that one exacerbates the other. Like Lyme can bring out MS by speeding the symptoms up. Weintraub explains most in her book and discussions.

I had a minute but wanted to respond to this.

They don't go away. Symptoms improve and palliative meds to alleviate them while during aggressive Lyme treatment will help

Steroids make BB (Lyme) breed like rabbits. Only in extreme cases where one could have CIDP, an IGG severe deficiency, or aseptic meningitis should steroids be used with extreme caution in the Lyme patient. Best of luck

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01/28/2009 12:43 PM
canucklymie
Canuck  
Posts: 1674
Senior Member

The question is , also-- how many have copies of their reports and have looked at the films or had second and third opinions? Most by this stage have.

There is always the antibiotic challenge test, take a course of them, test the urine to prove all the spirochetal dna is being expelled. You then have your proof without doing a tap

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01/29/2009 11:48 AM
mommy30
Posts: 33
Member

My husband has lyme and lesions on his spine, no other indications of MS. We were sure he had MS, since his brother has it. How are they treating you for Lyme?

My husband had the spinal tap to rule out MS too. He didnt want to do it, but really it wasnt bad at all for him. He just followed Dr's orders and lied flat fro two days, no headache.

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01/29/2009 02:31 PM
jennyC
jennyC  
Posts: 93
Member

i am on lots of supplements and immune boosters and also taking Mepron and Zithromax..........

i have good and bad days and seem to be noticing a cycle.

I live in Tn and see a dr in Ga.........after searching and testing for almost everything i really feel like i was led to this Doc.

He leans toward thinking that lyme is the cause of lots of these other diseases..((ms, alzheimer, park, als...etc....))

so if we kill what is causing all the symptoms and even the lesions! then, the body can start healing!

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01/29/2009 03:03 PM
lymiebird
Posts: 124
Member

If it's any consolation, I just discovered Lyme less than one year ago and I was infected in 1983 and have been sick with various things, especially the arthritises ever since. The doctors are still unwilling to say I have Lyme. I was always sensitive to things but it gets worse over time. There's no way I could tolerate antibiotic treatments. I have lost 25 years of my life and without a lottery win my financial picture currently looks very grim. Be grateful for what you do have. Be grateful for ALL of your friends. Be grateful for ALL your relatives even if you do not get along with them. Be grateful you have one or more doctors who are, at minimum, trying to help. Be grateful for every nights' sleep you get. Live in gratitude and do the best you can to leave your sorrows by the wayside. No matter how bad things get, remember there is always someone who has it worse. I try never to forget that.

Sorry for the sidetrack... in this past year I have done a LOT of research. I am far from “expert” but think I know more than my doctor at this point. Back around 1990 I was certain I had MS. I had all the symptoms, but here in BC one cannot just walk into a neurologist's office. They must get a referral from their General Practitioner/Family Doctor a.k.a. regular M.D. Mine wouldn't refer to neurologist, only rheumatologist. There were a good 2, maybe 3 years, I had all the MS symptoms. One of the things with Lyme is that many symptoms are transitory. They come, they go, sometimes they return, some times not, sometimes next week, sometimes 10 years later. My MS stuff eventually passed. In my recent research I am seeing a clearer picture of mis-diagnosis. One of the dominate ones is MS. It appears that many Lyme infected people are diagnosed with MS, whereby the source is/was actually Lyme. Now, whether or not the symptoms go away is another question. Some Lyme caused problems will never go away, particularly many of the arthritis problems. There isn't a clear picture with Lyme. – read the stories on how it got the cover up.

As for Lyme and lesions being a possibility, I think ANYTHING is possible with Lyme. That is one of it's bugaboos. It is not the same for everyone. No two people are alike. It depends on a number of factors. There are over 200 or more strains of Borrelia Burgdorfia. Some say 400. Each person's immune system is different as to how it treats/responds to the “bug”. It also depends where the spirochete decides to attack and / or hide. e/g I would imagine that someone who was infected, say, in the neck, would likely have more problems in their head and neck region than someone initially infected in their ankle. But that's just an assumption. My “rash” was on my thigh. My thigh, hip and leg were the first to be affected, then back, then neck, then other parts.

As for spinal taps... well... from your pic, you look fairly young. If it were me, and after having a horribly wicked test with dye in my spine once, I would make it a last priority. Also, get googling and searching on the web. I knew nothing about possible risks when I let them give me the test they did (not a tap but a dye test). I was majorly sick for weeks afterward. Messing with spinal fluid is not something to be taken lightly. Find out how much difference a tap would make in your treatment and outcome. North Americans have been bred to believe that medical science has the answers and that all, or most, things can be treated pharmaceutically. That's not always the case. If you are certain you have Lyme, treat it first if possible, and see what follows.

Namaste, Lymiebird

PS one thing which will help with how you feel, yet can take a long time and a lot of patience is to remove ALL chemicals from your home and diet. ALL of them; from perfumed laundry soap and shampoos to the sprays on fresh lettuce and spinach. And cut all all artificial colour, flavours, sweeteners, preservatives and additives. You will feel lots better but it takes a LONG time to clear them all out of your system.

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01/29/2009 08:49 PM
jennyC
jennyC  
Posts: 93
Member

thanks for the input! I am sending you a pm / check your inbox!
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01/30/2009 08:14 AM
krissy
krissy  
Posts: 171
Member

Jennyc'

During my journey searching for a dx I had a brain MRI and did have 1 lesion on my brain, but it was not located in the area where MS patients have them. Not sure of the area, would have to look it up.

My Neuro at the time told me i had a mini stroke, cuz of the slurred speech, dizziness etc.

Well I do have Lyme and brain Lesions are common in Lymies, I don't know what they mean or why they are there or if they go away with treatment.

Maybe someone will come along and answer this for me.

Thanks

God Bless

Krissy

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