tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
I'm getting really scared now. My MRI showed a lesion in my right frontal lobe and my spinal tap showed O bands. Both those results can mean MS.
My Neuro is now ordering a Visual Evoked Potential b/c my right eye is screwed up. It looks different. Almost looks like it is bulging and pupil more dilated. All my sx are worse on rt. side. It also feels like there is fluid/pressure behind the eye.
I'm also having symptoms in my right ear, sinus, neck, stabbing pain in top of head on rt. side (wouldn't that be the area of my lesion?) and some loss of control in my right arm and leg.
Could the fact that my lesion is on the right side be causing sx down my entire rt. side? Someone told me that the rt. side of the brain operates the left side of the body and vice versa. Does anyone know?
I looked up Visual Evoked Potential when I got home and realized it's also used to dx MS. My god! If this comes back positive too do I have MS?!
My Neuro told me today that so far my test results mean MS or Lyme. She said she's steering more toward Lyme. I guess I'm lucky she's Lyme friendly.
Someone please tell me that all these tests coming back positive are probably Lyme. I've been in treatment for Lyme for 9 mos. and have seen improvement. The topic of MS keeps coming up though.
Posts: 2541 | From Northeast | Registered: Jan 2008
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Hi Laura,
So sorry to hear you are having such trouble. Yes, the left side of the brain governs the right side of the body, and vice versa.
Try not to get too worked up just yet. Many patients who test like they have MS in fact have Lyme. There is some speculation that MS is Lyme, for that matter.
And many patients have had relief from their symptoms after treatment, even though there is not much change on their MRI. And just as you can have lesions and no symptoms, you can have symptoms and no lesions.
Dumb disease.
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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posted
So scary. I'm so sorry. From what I've heard and learned so far from everyone here, it's probably just Lyme, try not to worry.
My PCP read an article in Reader's Digest or something like that (?) and she told me that she didn't ever understand my story and the things I told her until she read the article.
She said it was about Chronic Lyme and how people formally diagnosed with MS, went through massive antibiotic treatment (IV treatment) and there MS "went away" - they also tested positive for Lyme.
I was glad that my PCP looked me in my face and she said "what I read was exactly what you told me", this is very political and very controversial. One down. Millions to go!
Let us know what happens....how do you even know?
-------------------- "~*~My smile hides my bite~*~." Posts: 506 | From N/A | Registered: Jun 2008
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Lyme causes lesions .
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
The majority of the body is controlled contra-laterally by the brain.
Thus, the right brain controls the left side of the body and vice versa.
Remember, there are some people with diagnosis of MS that are responding well to antibiotics.
I would be scared too if someone said MS. Take a deep breath.
We are all here on your side praying for you.
I had evoked potential done when I was 17 to ascertain the possible/probable cause of a hearing loss in left ear.
No cooperation needed. After going through all of these tests (slew of them),
It was determined that my hearing loss (left ear) was congenital.
That always means that they don't know what caused it or is causing it.
I hope your doc continues to be Lyme friendly.
Maybe some of these tests will open up the door for IV antibiotics.
Sending you positive thoughts and prayers.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
My neuro was referred by my LLMD. It seems my LLMD avoids IV at all costs. She is not an ILADS member but very good none the less. I wonder if many people go on IV after being on orals for a long time?
I guess either way I just keep soldiering on w/my Lyme treatment since if it is MS there is no cure anyway. This is at least giving me a chance I guess. Especially since MS may actually be Lyme. I recently came across something that said some MS patients are responding to abx.
If I had fired my PC a lot sooner then I'm sure I wouldn't have so much damage. I could feel it spreading through my body and effecting more and more areas of my body. When I finally fired him, it took my new PC only about a month to refer me to a LLMD after I tested positive for Myco and my EBV levels were through the roof even though my Lyme was negative.
The first PC also knew my EBV was very high (over 2000) but said it's no big deal! Ugh!
Strange thing is I'm a lot more functional in other ways now. Definitely a lot less fatigued and I actually go out and do things now.
With the fact that the left brain controls the right and vice versa, I don't know why my symptoms are worse on my right side head to toe. I wonder if other Lymies have primarily one sided sx head to toe.
Thanks everyone for your support. It really is a huge help. I guess I shouldn't pursue the MS thing too much b/c since I have a negative Lyme test, if I end up with an MS dx, insurance may not cover my Lyme treatment anymore.
Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
I was diagnosed with Primary Progressive MS from the Mayo Clinic in 1-08. It was based on evaluation, lesions on brain (not active) and on spinal cord, and positive evoked responses (leg and visual). My spinal tap was negative. Testing for Lyme was negative. He had no better explanation except to Brand me with PPMS. I lost all hope.
My major symptoms are weak right and left arm, unable to walk very good, pain in the neck and shoulder, tailbone sensations, bladder control, and fatigue.
I went to an eye doctor and they could not find any signs of MS!
In 3-08 I found a LLMD who testing me for Lyme (weak positive) but my CD-57 count was 18. He told me I had Lyme based on evaluation and test result for CD-57.
He started IV abx and felt better in 2 months. Bladder problem went away, strength in leg and arm was better, tailbone sensation went away. My local neurologist (working with my LLMD) was impressed.
The last 3 months have not been good though. I have lost all improvements and function worse now than I ever have. Some say it is herx but not sure why it is lasting 3 months. LLMD is trying to figure out.
Do not give up hope!!
laura J, I would like to talk direct with you to get more information about your symptoms. You are the only one that I have found with leg and arm weakness. Can you please pm me. Tks
Posts: 15 | From El Paso, Texas | Registered: Jul 2008
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
OutLaw
Dont be worried that your Herx has lasted 3 months- its common -
Mine lasted 12 months Solid and then Off and On for the Next 18 months --
Now I feel Great 95% of the time and think I am close to having this nightmare over -
Did you get infected in El Paso ??
I am from El Paso and sure miss Chicos Tacos and L-Js off of I10 -MMMM good
Laura-
MS is one of the Most common Wrong DXs that people with Lyme get - so don worry to much -
There is also Much talk now about MS being caused by or Really being Lyme -
Personally I think that MS - Alzheimer - and Autism will end up being Lyme related -
There are just So Many of the symptoms that are the same - Many of which I have personally have had -and have gone away-
Hope this helps you --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Don't sweat the MS diagnosis, because after all, it's a rule-out diganosis. There is no test for it. I had 2 neuro's admit as such and it's pretty much a long-term wait and see 'if it is MS' by tracking your changes.
I too had lesions (and the neuro quacks didn't want to hear about Lyme), but all evoked potentials came back normal. 'But let's wait and see. In another year or so, we'll do an MRI again to see if maybe it's MS'. Jeez louise... talk about a guessing game!!
Marnie used to have great info up about primarily right-sided or primarily left-sided symptoms.
I believe it was Right sided symptoms meant you were low on magnesium and left-sided meant you were low on calcium... Don't quote me.. do a search.
But all my symptoms were right-sided, and my magnesium levels were critically low. IV's, weekly IM shots and supplements have finally gotten me to normal range (it took 4 years. I still do weekly IM shots).
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
Hi Laura, My husband was diagnosed with MS 3-1/2 years ago, and he was treated with Rebif, an injectible interferon, for a year.
He only got worse on the Rebif, so at the end of that year, I searched for something different until I found the Vanderbilt/Wheldon protocol for treatment of chronic Chlamydia pneumoniae infection.
Turns out he has that infection along with chronic Mycoplasma pneumonia, EBV, CMV, HSV-1, and other Herpes family viral infections.
He only found out 7 months ago that he also has Lyme.
My opinion and that of his doctors is that MS is not a disease in and of itself, but a group of symptoms caused by the inflammatory processes that go along with chronic infections, elevated heavy metals/toxins, and allergies.
That opinion is contrary to that of most mainstream neurologists.
That crowd's view is that MS is primarily an autoimmune disease, so they treat with drugs that suppress the immune system.
As a group, they are dissatisfied with the state of affairs in MS treatment, because all those obscenely expensive drugs are not curing anyone---they are only delaying progression for some MSers some of the time for awhile or not at all.
The ultimate outcome is the same down the road.
The truth about the autoimmune model of MS is that it's an unproven theory. But given the overall structure of the "system" that includes the medical world, the FDA, medical journals, insurance companies, and big pharma, the fact that it's the current popular theory (because they don't actually know its cause) is not going to change anytime soon.
Here's the thing: there is autoimmunity in MS, but it's a secondary phenomenon, not primary. It's a result of chronic infections and their longterm effect on the immune system.
So, my message is this: don't get suckered by a neurologist who sticks you with a diagnosis of MS and then offers you exactly what you shouldn't have to treat it.
It is very comfortable to go along with those high and mighty types in their pristine lab coats in their plush offices, and you may well be drawn in by it.
BUT, you'll remember what the others and I have told you, so perhaps you won't lose too much time.
Best wishes, cypriane
-------------------- Dallas caregiver for husband Steve who has Bb, Cpn, Mpn, EBV, CMV, other Herpes family viruses Posts: 51 | From Dallas, TX | Registered: May 2008
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posted
You are so fortunate that your neuro is actually considering lyme! After months of MS testing,I finally had a CDC positive test for lyme and my neuro was still telling me that lyme didn't exist in my state. He wanted to send me to the Mayo Clinic and I declined because I already had an appointment lined up w/Dr. C.
Believe me, I know how you feel. I have numerous lesions on both sides, but the largest are on my right side. I have mostly left sided issues, even my reflexes are more hyper on that side.
I am not sure about the right sided symptoms. Some of it could just be peripheral and not coming from your brain. Did they ever do a spinal MRI? They always told me that mine was coming from the brain, but who really knows? They told me a lot of things that weren't true!
Did they say that your lesion was "typical" for MS? I know they look for oval shaped lesions that are periventricular and not in the frontal lobe usually. Have you had any changes on MRI or enhancement with dye? I also have O banding in the CSF, but just one. You know that means that you are mass producing certain antibodies in your CSF that you aren't producing in your blood...which could be from lyme.
I had 3 evoked potentials and they were all considered normal, but I had a lot more ear issues than eye issues. I wouldn't think that it would "make" the MS diagnosis even if it was positive. I have heard that Lyme can affect any neurological test for MS.
There is a Mcdonald Criteria for diagnosing MS and even though I have @13 brain lesions, one O-band and hyper reflexes... I was a long ways from being diagnosed w/MS. Even though some Neuro's I saw told me that they thought that I had it. Of course I have been "diagnosed" with other diseases that I didn't have either.
I saw the top MS doctor in my state and he told me that he didn't think that I had MS because my symptoms were continuous and progressing and because my lesions weren't "typical" for MS. Most of the time people with MS will have an "attack" for a few weeks to a couple months, then it goes away on its own. They show changes in their MRI's, new lesions and the healing of old lesions.
My symptoms NEVER went away until I had started antibiotics!
It sounds like you are in really good hands because you have a doctor that knows about and is considering both possibilities and is actually leaning towards lyme!! That just doesn't exist in my state.
My doctors would have just let me get worse until I would have eventually developed MS just so they could be "right". Just know that you are getting treatment and doing the best that you can do for yourself. I think there are a lot of us here that know how you feel and can totally empathize!
The objectives of this article are to cover issues related to Lyme disease that are not even-handedly addressed in the current literature. It will:
1 Present a practical approach for making the diagnosis of neuroborreliosis,
2 Explore the other side of the post-Lyme syndrome (i.e. the likelihood of chronic ongoing infection),
3 Discuss the relationship between MS and Lyme,
4 Critique the current regimens published for treating neuroborreliosis, and
5 Present my own approach which may differ from some leading authorities.
``Anyone who, in discussion, relies upon authority uses not his understanding but rather his memory.''
--Leonardo da Vinci, Notebooks (c. 1500)
It is hoped this data will provide the reader with a broader understanding of neuroborreliosis so that he or she may better use current and evolving knowledge for clinical decision making.
--
full two page article at link above. Be sure to see the second page, it can be overlooked.
posted
Groovy2 Not really sure where I got Lyme. House in El Paso was infested with ticks and the best that I can remember they looked like Lone Star tick (about 10 years ago). Our two dogs had several on them and were attached.
We also go camping a lot in the Lincoln National Forrest.
You are right, Chico's is the best. They have opened two new ones in the last couple of years.
How long were you on IV abx and oral abx? I have been on IV for five months.
Posts: 15 | From El Paso, Texas | Registered: Jul 2008
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