Lyme, MS, EBV, or something else?

[ginak]

Hello All,

I have been lurking around on this forum since last year, about 2 months after all of my symptoms started. After a viral illness in July of 08, I began to have vertigo like symptoms and migratory joint pain. In September, my symptoms took on a MS like nature. My most recent symptoms are:

1. LIGHT MIGRATORY TINGLING IN DIFFERENT PARTS OF THE BODY
2. NUMBNESS IN HANDS WHEN WAKING UP IN THE MORNING.
3. OCCASIONAL PAIN IN MY LEFT SHOULDER.
4. PAIN AT THE BOTTOM OF BOTH FEET WHEN WAKING IN THE MORNINGS.
5. RIGHT SHOULDER STARTING TO ACHE, LOWER BACK PAIN
6. RASH ON NECK THAT WAS PRESENT PRIOR TO ALL OF THIS. (-) ANA but elevated Sed Rate.
7. FLOATERS STILL IN RIGHT EYE - blurry vision as well.
8. INTERNAL TREMOR
9. TINNITUS IN LEFT EAR AND PULSATILE TINNITUS IN RIGHT EAR
10. LATEST SYMPTOM-FEELINGS OF HEAT AND COLDNESS IN BOTH EXTREMITIES, BUT MOSTLY ON THE LEFT SIDE.

I have had 2 brain mris(Sept 08)-both negative
               EVP-October 08
               LP-Normal with the exception of myelin sheath basic protein
               bone scan-Normal (October 08)
               cervical MRI-Normal(Sept 08)
I have had a ton of blood work. I see my neurologist monthly. The only + blood tests that have come up include Epstein Barr titers (all 3) and low vitamin D level (which was treated for a total of 3 months up until March 09)

Igenix lyme test-Told that the test was slightly (+) and have been treated with abx's for the last 3 months. At this point, I am being told that I have clinical lyme by the LLMD. The neuro doesn't know or acknowledge anything about lyme disease because he doesn't know enough about it and thankfully doesn't pretend to. The ID doesn't have a clue about anything and laughed at everything. My neurologist would like for me to have mris again in September of this year.

At this point, I am frustrated, scared, depressed, and not married to any diagnosis. All I know is that I would like to feel better and I have not felt the same since July of 2008. Could any of you give me any insight as to what my next step should be. I have been seen by 2 neurologists. I am thinking of going back to neuro #1 just to see if I can get an explanation for my symptoms.

[Quixotic1]

Elevated EBV titers do not explain your neurologic symptoms.  Elevated EBV is very common and is frequently seen in MS, Chronic Fatigue and some others.  The low Vit D is frequently seen in all of the autoimmune disorders and also in lyme.  EBV is untreatable - it does not respond to anti-virals as far as I understand.

Given your + Lyme bands I am still much more suspicious of Lyme Disease.  I do not know with any certainty whether Chronic Lyme exists, but I lean toward believing it.  I am concerned that you are no better on the current antibiotic regimen.  Did you start with high dose IV antibiotics?  What does your LLMD say about the lack of improvement?  I would think that if you are on the correct cocktail that you would see "some" improvement by now.  Maybe that needs to be tweaked.

How elevated are the EBV titers?  Can you give us the numbers?

Lyme Disease dose not "have" to move around.  Symptoms can certain remain stationary.  I make the connection of migratory symptoms to Lyme because those "can" be seen in Lyme and are very atypical of MS, but I never meant to imply that all symptoms move around in Lyme.

Your only real positive finding that can point to something that can cause your symptoms is the positive Lyme bands.

Quix

[ginak]

Quix,

Thanks so much for responding. I have been working some late hours and I am sorry to just getting back to you.

For starters, I am still taking the abx for "clinical lyme disease". There was a small amount of lyme that was found in my spinal fluid. It was not enough to be considered a (+) result or a result to be concerned about according to the ID or my current neuro. I have had a few (+) bands for lyme and many IND bands. Of course, none of this means much when it comes to lyme disease.

Because I am still taking the abx (3rd month), I have felt like my symptoms have worsened. I felt better the first week of treatment and I have felt bad since that time. Mostly, the pulsatile and regular tinnitus are the worse. The hot and cold sensations are no better.

I have been trying to watch the pattern of my symptoms and although some of my symptoms migrate from place to place, I have recurrent symptoms like buzzing that comes and goes in my left foot mostly. I have found that I tend to have more symptoms on my left side.

What was interesting is that I went back to neuro #1, who took a look at my spinal tap results and told me that she didn't see any elevated MBP. I have to really wonder if she knows how to read the report because the report itself doesn't give a numerical value, but gives a "volcano" looking picture with words like gamma and alpha on it. I have no idea what they mean, so I won't even try to figure it out. Neuro #2 has been watching me closely and I don't think he would have told me about the MBP elevation if there was not one.

Neuro #2 wants to do mris again in September (one year from the last mri)  where as neuro #1 wants to do mris again right now. I asked her if she would be able to distinguish lyme lesions from ms lesions if I was to have it done. Once again, she told me that I did not have lyme disease. She told me that if there was anything that showed up on my mri, she would need to do another spinal tap. I am completely against this due to the bad experience that I had with the first one.

With this said, I am going to do what you suggested and continue to see neuro #2. I will also continue to take the abx. I feel like I have this huge question mark over my head as so many others do while in limboland. I would just like to know what is wrong. For right now, all I do know is that I still have high EBV titers, low Vitamin D, and a few (+) lyme bands.

As always Quix, thanks for your advice and your insight. You are certainly appreciated.

[Quixotic1]

Hi, Kiddo, I finally am fulfilling my promise of some kind of answer.  I, too am at a loss for what is wrong.  I will say that the way your illness began and the current problems you are having still do not sound like MS (to me).

When you describe a viral-like illness followed by joint pains, I have to think of the many viruses that can cause this and subsequent neurologic illnesses and I continue to be concerned about Lyme.  Were you improved at all during the 3 months you were treated for Lyme Disease?  

All of the neuro symptoms that you mention are likely from peripheral nervous system.  The rash, sed rate and joint symptoms and migratory tingling do NOT fit with MS, but would definitely fit with Lyme or some other inflammatory disease.

When you say there is still some Lyme left in you what did you mean?  Did they find Lyme antibodies or DNA in your CSF or in your blood?  You say the Igenex is still stightly positive.  I gather that is the blood test for antibodies.  Remember that the immune system does not stop making antibodies after an infection is treated.  Many times the antibodies for an infection can be detected for the person's entire life.  this even happens after an immunization.

Your ID guy seems not to believe in the idea of "chronic lyme."  But he also has no ideas about what is going on either, so he seems pretty useless.   Have you seen a rheumatologist?  

How high is your sed rate?  MS does not elevate the sed rate.  Lyme may or may not.

At this point it seems that the LLMD and the neuro are the ones that have the most interest.  The LLMD feels that as long as you show clinical signs of Lyme, you should continue antibiotics, right?  I agree that you should be followed with regular MRIs as the neuro wants to do.  Is any part of your neuro exam abnormal?

You are correct that the MBP is very nonspecific.  Several years ago it was hoped that this would be a marker for MS, but it didn't turn out to be that useful.  I disagree with scaredguy.  I do not think you should be looking at having too different diseases that both began at the same time.  I also agree with Heather that the idea of getting into a very hot bath is a bad idea.

So, I have done little but, restate what you said.  I really don't think this sounds like MS.  If you think a fresh approach would be helpful, then by all means see the first neuro again, but it does sound like the current neuro is monitoring you for any change and keeping his eyes open.

Are you going to continue the antibiotics for now?

Quix

[Heather3418]

Sorry scaredguy, I must warn you, if you have the slightest idea that you may have MS, taking the HOT bath test is NOT a good idea at all.  If you do have MS it can cause permanent damage, from that kind of exposure.

If I am wrong, may Mother Quizzle slap me down.

NO hot bath tests.....

Very Respectfully,
Heather

[scaredguy309]

k. lupus can mimic ms and also having lupus and ms is possible, which is what am currently thinking for myself. Although my ANA was way negative, it was done when most of my symptoms died down so am waiting for the next attack.

People with ms tend to be sensitive to heat. So maybe you can try having a hot shower for a couple mins and see if stuff gets worse. Try doing it many times to see if theres any pattern as the mind can play tricks especially when you think you're sick. Its not a diagnostic test but it may lead you in the right direction. Also, people with lupus get high ANAs have spending time in sunlight. So if your doc orders another ANA then spend some time in the sun and if its lupus it should show.

Am not saying you hav any of those ilnesses or i think you do. But if you're like me and you want to find answers quicker then there are some things you can try.

[ginak]

Thank you for replying. High MBP is a non-specific indicator and can be elevated in a number of CNS infections. My current neuro thinks that this could be the result of the EBV. I must add that there was a small amount of lyme present in my CSF. Although not enough to be considered positive, it was still present, but again, the ID and the neuro both thought nothing of this. My LLMD doesn't seem secure enough to think much of it either. Its all just very frustrating. I have thought about lupus and I even have a relative with lupus, but no one has given this much thought at all.

[scaredguy309]

what does your neuro think of the myeline protein from the lp? the elevated esr does indicate some inflamation. Ever thought about lupus? There are a number of mimics so for now be cool and keep working with the doc. It wud be better to work with a neuro who has lots of experience with ms or an ms specialist.